Articles tagged with: rare diseases

Acro Moods

Written by Michael Cookman on Thursday, November 15, 2012. Posted in Blog

Acro Moods

By Mike Cookman

 

One night I was sitting at my window and watching rain pour all over the neighborhood and for some reason I got to thinking about what life was like before I was diagnosed with Acromegaly, and a feeling of melancholy warmed through me and I thought of my early days with Borders and that warmth settled in around my eyes and I started to cry.

Before a diagnosis such as this you don’t think about the cost of prescriptions and medical bills and, above all, being chronically sick. Or, I didn’t, anyway.

I supposed it’s normal to look back fondly on the past, as the song goes “I’ve never seen a sight that didn’t look better looking back.” From Paint Your Wagon, in case you’re wondering.

Anyway, I don’t recall that I was one who looked back much, whatever was there was there to stay and I liked looking forward to the next day.

But now I am constantly reminiscing and seeing things as better than they probably were since I now have this illness.

Funny how moods can pop up now that may not have previously been there. I don’t recall ever being frightfully depressed the way I sometimes get now and I don’t remember just suddenly crying out of nowhere, which doesn’t happen often, but when it does it takes hold with a strong grip.

I’ve heard it said that this illness does that to you. But I have wondered if that is actually the case, or do we now display moods and feelings that were always there but now have reason to come out and play. That’s a fine line to draw, of course, but I find it difficult to believe that every Acromegaly patient is the same in these respects. As in—just because I get these crying jags doesn’t mean everybody else has to. I hope not, anyway.

I don’t think it’s the same for everybody, I think whatever happens, eh, happens. And there is no real explaining it.  I know some things are proven, so to speak, but that’s mostly the result of a lot of patients talking and saying, “yeah, I get that, too.”

So now others feel that something is wrong if they don’t “get that.”   If they don’t have sudden crying jags then they feel they are doing something wrong or something additional is wrong with them. I’m not saying we are all sheep; I’m pondering this and hoping that this all just goes without saying, as one might say.

The reason I started thinking about this is because I have heard a lot about isolation feelings among Acro patients, but I have not felt that myself. I feel lonely sometimes, everybody does now and then, but that’s not an Acro thing, as we say in the biz.

The isolation is a feeling some get because they feel they are alone and nobody really understands this oddball thing called Acromegaly, alone because at first it seems there are no other people on the planet with said illness and why me? Why do I have this thing when I don’t want to and I would like to meet someone who also has it—not wishing it on anyone, you understand---but there has to be someone out there!!

And I’m sorry, but I have never felt that, in fact I thought it was kind of cool that I had a rare illness, except for the fact that I had a rare illness.

But one person did have those isolation feelings and that is a fellow by the name of Wayne. He did not want to be alone so he created the AcromegalyCommunity.com and now lots of Acromegaly patients enjoy the company of other Acro’s and many friendships have been started.

When I do feel lonely that’s where I go, to hang with my Acro friends, that’s the future and the future is now.

A Public Stoning or A Milestone Birthday

on Monday, September 24, 2012. Posted in Blog

By Wayne Brown
www.AcromegalyCommunity.com


Birthdays are a funny thing.  From our youngest days, we know it is the one day of the year where we are guaranteed to be the star of the day.  In spite of this, or maybe because of it, people have very strong feelings about that day.  When we are young, and our parents are throwing the party, and our day is filled with balloons, cake, friends, family, and scads of presents; we think the day is our own personal national holiday, and we have another million of them to come.  But then we go and screw things up by getting older.

If you are like me, and you suffered the loss of a family member at an overly young age, while birthdays are cause for celebration, they can also be somewhat like a countdown.  I lost my father when he was 50 years old, and I was only 22.  Since that day, 50 is the big number that I see hanging over my head, much bigger and brighter now, as my 40th approaches this Sunday.  Birthdays are a mile-marker for many of us; a time for self-reflection or mental inventory of dreams and goals accomplished, anticipating, or changing.  One of my friends who just turned 31 was listing all the things he thought he would have had by 30, that still evaded him, mainly, wife and kids.  I was empathetic because I had that same feeling when I was turning 31.  I know, for some ladies it may be strange to hear that some guys have that on our checklist, but some of us actually do.

47904_10151264911151617_2123846082_nWe all have a checklist, a bucket list, a dreams list, or whatever you choose to call it; some list that may or may not be written down.  A list of dreams you wish to accomplish in your lifetime.  Making checkmarks on the list are very cool and offer a feeling of accomplishment and pride, but as the candles stack up, and the cake gets brighter, the light from those candles can seem to merely spotlight the unchecked items you most hoped to cross off the list.

I am extremely fortunate that many of my major items have been checked, or will be soon:  live overseas, write a book, and teach were some of my big check-offs.  All those have been accomplished, much to my pride and satisfaction.  Now I would like to write book two.  Adding items to the list is a necessary thing- it’s a showing that you have plans to be around for a while, and that you are making positive momentum.  If your entire list is checked off when you are 25, you need to dream harder, and expand the list!

Soon I will be checking off the goal of being married.  While I am doing it later than expected, the wait was worth it; and I am marrying my perfect woman- so it was worth the wait.  Now, when or whether we have a family, only time will tell, but if it does happen, it’s another checkmark, meaning I have two spaces waiting to be filled in with new life goals.

I have a bunch of other items on my checklist, but that is not necessarily the focus of this piece.  In my life, I have outlived multiple near-death experiences, a fairly harrowing accomplishment when you are still in your fourth decade of life.  One of the most traumatic things I have lived through, I did publicly; and surprisingly, I do not consider it to be one of my near-death experiences.  Being diagnosed with a (near) brain tumor when I was 32 changed my life perspective, and I would argue actually restored my freedom to live.  Before that, I was slowly being killed by this tumor, and I didn’t even know it.

Within days of starting medication, I felt like a new man, and every day was a little better.   Surgery would come six month later, and I knew almost right after I woke up that my life was mine to live now--- however I chose!  I could live it as a patient with a tumor or as a person who is living their life as freely as they wish, who happens to have a medical history.  It’s a difficult crossroads, and not everyone with medical challenges gets the chance to make this decision.  I did have that choice, and I chose the latter.  Like so many choices in life, it is the more difficult and more rewarding choice.

Since my surgery, recovery, fallback, readjustment, and stability, I have had several birthdays pass.  The next major milestone is mere hours away… Last year, when 39 hit, I was somewhat melancholy but accepting of it, inventorying all I had not yet checked off from my list yet.  While I had dated before, I never even came close to getting it right, and now 40 is on the way.  Oh well… I guess, if I am meant to spend my entire life single, I will make my life as amazing as possible.

Thirty-nine has been a fun year.  I guess it goes to the theory that there is no freer a man than one who has nothing to lose.  I am sure that this new attitude played no small part in readying myself to find the love of my life.  But even if I hadn’t… even if it was still me and the pups at home…  I had carved quite a great life for myself.  I had amazing family and friends who I loved, and they felt the same about me, I had created a cause for support that I turned into a charity that was helping people the world over, and I had a routine I enjoyed where I could still escape it all in my home, where my sanctuary was.

Now 40 is about to be in the rear-view before I know it.  The theme of the party, you ask?  “It’s the end… of his 30’s.”  Some fiancé, I know…  What can I say; her sense of humor is corrupted, broken, and just like mine!  She came up with this theme on one of our first dates, and so far everyone has thought it’s brilliant!

Seemingly hours after my 40th, I will be married.  What happens from there, I don’t know.  I bet you are thinking that now that I am in wedded bliss, I have shaken my birthday phobias.  Oh, au contraire.  Phobias are not necessarily rational fears, and a new piece of jewelry will not conquer them; but maybe I understand this one better.  Now that I will be married, the fear is even stronger, and the stakes are even higher.  When it was just me, if I died tomorrow, who would care, really?  Sure, my family and friends would miss me, someone would need to take over management of the charity, and someone would need to take care of the dogs.  As soon as all that has settled down, I felt like my life was effectively settled.  All paid up, no IOU’s.  Now that I am to be married, I have someone else to worry about!  Oh man!!!

This reality of responsibility was smacked over my head mere weeks ago, when my cousin, of only 43 years, was taken from the earth thanks to a massive heart attack.  No warnings.  No bright lights.  No sirens flashing.  He was there in the morning taking care of his wife and kids, went to work, laughed and joked with his friends, maybe had a light lunch, and by dinnertime, his wife was a widow and his kids lost their dad.  It is, to say the least, earth-shattering.

Now, I am not switching places with my parents or my cousin, but I think that it was cause for alert in me.  I needed to take inventory of my world/birthday view.  I needed to stop with the, if I go tomorrow, my life can be swept away with a little paperwork and some Kleenex.  I don’t know if I am going tomorrow, or in a hundred years, but I am going to seize every day.

cake457That said, if you think I am not watching the clock for my 44th birthday, and then my 51st birthday, you need to take off the rose-colored glasses, or at least tilt them a smidge.  My fiancé embraces every birthday as a huge party, and I adore her for that.  It reminds me of growing up with my dad, who used to celebrate “birthday month.” After he was gone, I just didn’t care as much about the day.  Sorry, I just didn’t.  It wasn’t the same.  And honestly, it wasn’t until my fiancé got so excited about her birthday that I really drew the connection in what made me change so much.  I kept asking her why she was so excited, and her answers were so simple, of being with friends, enjoying another year, and of course delicious cake!  Hmmm… Maybe I needed to take a longer look at this birthday thing, focusing on the excitement, rather than anticipating what birthday party I would not be attending.

We were talking this past weekend about upcoming birthdays, we were joking about the 40th, and naturally for me, 50 was on my mind.  As the conversation wound that way, my eyes got a little wet.  I said that to me, the 51st was far more important than 50, so she asked the logical question: should the big party be 51 instead of 50?  I said no.  Let’s make 50 a bash, so we can enjoy it.  She smiled and said that was fine, and that 51 would be a fantastic birthday with family around.  I smiled and agreed.

Dreading a milestone birthday isn’t a negative connotation, as far as I am concerned.  Yes, it is just a number, but we only get a certain amount of those numbers, and I am really enjoying the ride, so why would I want to get off?  Have you ever been to a great show where, at intermission, you are raving about what a great show it is and how you want to see the show go on and on?  Some of us are blessed and cursed with a hyper-awareness of mortality.  We are not more or less emotionally healthy than you are, and you needn’t feel the compulsion to correct us.  I love my life, and I hope I live for another hundred years.  That said, I know it is fairly unlikely.

I would love to have a family, and watch my great-great-grandchildren get married.  Fairly unlikely, but we will see what medical technology has in its future.  This skepticism doesn’t mean I am fatalistic or unhappy, quite the contrary.  I love my life and wouldn’t trade it with anyone at all.  All it means is that I have a greater awareness of lifespan than you might, at least at this point right now.  And we are both right, for how it works best for us.  Please don’t try to force my eyes closed, and I will not try to pry your lids open.  We both know what is there, and both of us have our own systems for managing it.

Whatever happens happens, and obviously we have no control over it.  That said, I am still going to keep one eye on the clock… at least until I break the ceiling of my 51st birthday.  If you understand all of this and it makes sense to you, you are welcome to come to the party.  If you want to fight me on whether I am right for feeling the way I do, I am eating your slice of cake!

Learning To Love Through Others' Eyes

on Friday, September 21, 2012. Posted in Blog

Labels, Love, and Self-Actualization --- A Worthy, But Difficult Trip

It’s funny how life can define you, even when you fight against the definition it forces upon you.  It was November of 2004 when I was diagnosed with a rare disease.  Acromegaly, my new diagnosis, was a rare tumor that grew in my pituitary.  In other words, I was told that I have a tumor in my head only nine years after I lost my dad to brain cancer.  No matter how hard I fought it, with one quick diagnosis, all of my visions of self were being redefined against my will.

From the time we are old enough to crawl, we are labeled: social or shy, generous or stingy, gifted or challenged…. And on it goes, for the rest of our lives.  It’s really easy to look at a loved one, friend, or stranger and give them a label- to categorize them in a way that we can most efficiently classify them; a prism with which to best see, hear, and interpret all the information they share with us.  That said, looking at our own lives through that same critical lens can be incredibly difficult, if not impossible- because we are forced to really analyze the accuracy of the labels we have given ourselves.

Frequently, the meanest, most hurtful labels we are given: loser, failure, fat or scrawny, etc. are given to us by our own self-consciences, and those seem to be the most difficult to shake, because they are self-imposed definitions.  Sometimes the easiest way to shake these derisive values is to find someone who we can trust enough to convince us that our own self-defined derision is unworthy, and that we are really the good people we set out to be every day.  It is likely that the person is your best friend, and hopefully also your spouse.

I lost my father when I was 22-years old, and spent those key years that most people use to set up their adult lives basically playing surrogate husband to my mother.  Meanwhile, my tumor was running rampant in my body, without my knowledge.  While I am at peace with my past now, I was secretly a little angry at my mom, because while my friends were finding the loves of their lives, I was driving her from pillar to post on the weekends.

Fast forward to my diagnosis in 2004, it was my mom’s strength that helped me deal with my diagnosis.  I was happy to have her to keep me strong, but it was during this time that I started to realize that I was probably going to die alone.  Who the hell wants a guy who knows that they have a tumor BEFORE they commit to a life with you?!  I convinced myself I was okay with that, and I was damn good company, and if someone didn’t see that, it was their loss, because I really liked hanging out with me!  While I truly believed that, it didn’t mitigate the loneliness.

It’s funny… as I grew older, I developed a core group of friends who I enjoyed hanging out with, but I still felt alone.  Only an adult single person can identify the feeling of being surrounded by people you love, and still feeling totally isolated.  I loved my friends, but I still kind of felt saddened that a big part of me was missing.  It’s not that I needed my identity to be wrapped up in someone else, but I grew up in the perfect home.  My parents loved each other, and when I say loved, I mean they looooooooooooooooved each other.  Sadly, a sentiment rarely found today.  My parents had their own lives, but they were always happiest when they were together.  They were the couple who actually did fall more in love every day.  That’s all I wanted, nothing too much- right?  That was simple enough to find.  Ha!

I tried it all.  Bars. Meh.  Religious venues.  Not my scene.  So I turned to the world of third party introductions.  The first time I attempted to meet someone, I remember it was a Thursday night.  The newspaper was sitting on the couch open to the singles ads almost daring me to try (it was the 90’s… what do you want?!).  So at $2 a minute, I gave it a shot.  Nothing…  except a huge phone bill.  Oh well.  I tried.  When the internet came about, I think I tried every online service, although I would never tell my friends.  At the time, meeting someone on the internet seemed to be reserved for chat board people discussing Dungeons & Dragons, and crazy people.  I didn’t feel that I was either.

What did happen was that I became a first date ninja… I could go on a first date without anyone ever knowing, sometimes even the girl I went out with!

I was starting to add new labels to my self-defined collection: loner, loser, single-for-life, and after I knew of my acromegaly, diseased.  When do you tell someone?  I tried all different times, and it seemed like the time I picked was always wrong- but I didn’t want to hide it from them either, since it is part of who I was, right?  I would get close enough to a person to finally feel brave enough to tell them about my condition, and they disappeared in a cloud of dust like the Roadrunner did when Wile E. Coyote was just about to catch him.  Oh well.  I decided that maybe I wasn’t meant to find my rainbow, and unwillingly grew to be accepting, or at least resigned to it.

The sad reality is that not everyone will find their rainbow.  The sadder reality is that some people are married and suffering because they are not enjoying their rainbow.  You can see it in their eyes, and hear it in their voices.   Whether you are single, or married and miserable, you need to find a way to make the best of your situation.  No, it’s not easy, but misery will never breed happiness.

If you are single, focus on what makes you think you are pretty great.  If you are in an unhappy relationship, get out before it’s too late.  Pre-wedding jitters?  That’s your brain telling you something doesn’t feel right about this version of forever.  If you are in a marriage with someone you don’t love, work to remember why you fell in love with them.  Divorces only make divorce lawyers happy.  They will help you fight to your last dollar.  Focus on the original spark, and hopefully that will reignite the flame you once had for each other.

I am one of the lucky ones though.  The ability to be self-reflective, while painful, offers insight.  I saw my friends in unhappy relationships, and I saw my friends who were married to their best friends.  I decided that I was going to either marry my best friend or die alone, because to be married to someone I hate is worse than dying alone.  While I didn’t always talk nicely to myself, I thought I was a pretty nifty guy, worthy of someone who would treat me as such.

So back to the internet I went.  In one last futile attempt to find my special someone, I decided to place an ad on another website.  I met a lot of nice people who were absolutely horrible matches for me, but I enjoyed the self-discovery, and figuring out more of what I needed to make me happy.  Then, in January, I emailed a girl who I thought looked and sounded pretty interesting.  We exchanged several emails, each one longer than the previous, until they were becoming chapter-length.  While this excited me, I have been down this road before, and tried to temper my excitement.  I agreed to call her on a Tuesday evening after the class I was teaching ended.  We talked from about 930pm until about 4am.  The next day, we talked again, starting at 8pm, and I joked that we definitely wouldn’t talk till 4am tonight.  That was a lie.  Still, the phone is easy.  In-person is what counts.

Our first date was only about two weeks after we were introduced online.  I was anticipatory, but still somewhat detached; after all, I had been here before.  Our first date went until the wee hours, as did our second date, the next night.  In fact, since our first date, the only days we haven’t shared the same space is when one of us is traveling.

I first mentioned the idea of shopping for rings a mere ten days after we met.  While, in hindsight, it seems a little crazy to both of us, we both knew it was right.  Somewhere in my subconscious I knew I found my best friend.  I realized I had loved her days before when I finally got the courage to tell her about my disease.  I was so nervous that I couldn’t even look at her as I told her.  I finally spit it out, and she said words I will always remember:  “I was wondering when you were going to tell me.”  Finally, someone who saw me for me!

After I friended her on facebook, apparently, someone made reference to my book, and she bought it and read it.  I paused for a second and immediately replied, “so do I owe you the ten bucks now?”  She is sarcastic, funny, and beautiful.  She sees beyond all my faults, and I am amazed that she is without any faults of her own!  (She may read this, call me and I will tell you all her faults!)  This is our life.  We joke with each other before anything else.  In fact, mere moments before we told each other we loved each other for the first time, we were mocking each other.  Our first thought, when things go wrong, is to make jokes.  Laughter helps to mitigate pain.

I am not going to die alone.  I am going to spend the rest of my life with my best friend, not because of my disease, but in spite of it.  It’s not because she was handed to me, I had to fight for her, and be willing to not settle for less than I deserved.

Life without any real challenges is hard enough, and no one is promised a rainbow, but one thing I learned is that the rainbow will not come looking for you.  I was always told that love comes when you are least looking for it.  While it’s kind of true, because no one wants to date the person who reeks of desperation, if you aren’t out actively pursuing your rainbow, it aint gonna find you.

My disease sucks.  And some days are worse than others.  But I know that I am not fighting alone, and that makes every day easier.  If you are single, you don’t need to wear your disease like a badge.  NOT a first date conversation.  But it’s also not something you should spring on your spouse on the honeymoon.  If you are single and without disease, don’t be afraid of us.  Find out about what the person has.  If you can live with the symptoms and you really love the person they are, that is true love- enjoy it.  Guess what?  The human body is a flawed system and it will break down--- yes, even yours!  It’s a lot easier to have someone in your life who can understand and will look out for you.  If you are married, whether its peaches and cream, or the cream may have started to curdle, embrace that person!  Scoop the curdle chunks out and figure out how to see that person the way you did on your wedding day.

I remember when my fiancé’s best friend said to me, “I can’t wait for us to grow old and smelly together!”  That was the first time it really hit me.  My life was forever changed- for the better.  My fiancé and I both LOVE each other, and adore each other’s friends.  It’s not easy to find, but it’s worth the patient fight to find it.  I love her, and spend every waking moment with her trying to make her happy beyond her wildest dreams, and here’s the kick--- she does the same for me.

We don’t fight.  Not because we always agree, or one of us is always surrendering; that is not a relationship; that is sheer dominance.  What makes us work so well is that we both compromise.  If she wants something I am indifferent to, I will do it, and if I want something she is indifferent to, I get it.  If we both have different, passionate desires, we find the middle- and that is where the happiness lies.  No one walks away feeling like they lost, or the other person owes them one.  If you are keeping score, the loser will always be quietly unhappy.  Throw away the scorecard, and embrace the middle ground.

I know that 50 years from now, looking at her in the morning will still make me smile, and seeing her all dolled up will still take my breath away.  My disease is still part of my life, and always will be- but it is a small part of a very large picture.  The labels I see today are the ones that she has helped me see:  good person, generous, loving, kind, and funny.  I know that she appreciates the labels I have helped her see, and they are identical.

Thanks for everything, babe.  You are my perfect, forever.

Together We Can Cure the Loneliness

on Sunday, September 09, 2012. Posted in Blog

Acromegaly Community is launching a new campaign to help "Cure the Loneliness"

This campaign is based around the fact that hundreds of people get this disease every year and feel like they have no one to turn to, but that's where Acromegaly Community comes in.

It is our mission to provide an emotional and communal supprt network for people touched by Acromegaly. We offer a central location for medical issues including: surgery, medication, radiation, and post diagnosis support. Most importantly, we work to provide a network of emotional support for acromegaly patients, their friends and their family.

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So How Can You Help?

By creating your fundraising page above and raising at least $5, Acromegaly Community will send you one of our famous blue   bracelets (see below). For every additional $5 you raise, we will send you another bracelet so you can hand them out to your donors.
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Don't forget to take pictures of you and your supporterd wearing the bracelets and post them to your fundraising page and then share them on Facebook, Twitter and email.


Simply click on the bracelet to get yours, and join in the fun!

Tanya Angus Has Hope in Growing Battle Against Gigantism

on Saturday, September 01, 2012. Posted in Blog

 

For the first time in a decade Tanya Angus, who is fighting a life-and-death battle against gigantism, has stopped growing. At seven feet and 400 pounds, she now has some hope.

Angus, a 33-year-old from Las Vegas, was diagnosed with acromegaly, a rare pituitary disorder that causes the body to produce too much growth hormone. It affects about 20,000 Americans.

Since 2010, when ABCNews.com first told her story, Angus has grown an inch taller and gained 30 pounds. Before the disease began its destructive course, she was only 5 feet 8 inches tall and weighed 135 pounds.

But for the last year, she has been treated with a drug that has kept the levels of growth hormone in her blood in the normal range.

"This is such good news," Angus told ABC's Las Vegas affiliate KTNV.

Angus has grown so large that she can barely walk and a swimming pool is the only place where she is without pain because she can float there.

VIDEO: Tanya Angus is making progress with drug treatment for Acromegaly, a rare pituitary disorder.
ABCNEWS.com
Hope for Tanya Angus Watch Video
Possible Cure for Woman With Gigantism Watch Video
No Surgery for Woman with Gigantism Watch Video

"It feels so, like, liberating," said Angus, who is being nearly crushed by her weight. She needs constant care from he family and friends.

Angus has a tumor on her pituitary gland but radiation and three surgeries have done nothing to stop her dangerous growth. One 13-hour operation nearly killed her, and another caused a stroke that took away most of her hearing.

As her body gets larger, so do her other organs. Her heart, lungs, joints and other parts of her body have also grown under the strain of this rare disease.

Doctors say it is one of the worst cases of acromegaly that they have ever seen. Her mother, Karen Strutynski, says it is the "worst in the world."

About 95 percent of the time, the condition is caused by a non-cancerous tumor on the pituitary gland, according to the Pituitary Network Association. Such is the case with Angus, but her tumor is wrapped around her carotid artery, and is inoperable.

Dr. Laurence Katznelson, professor of medicine and neurosurgery at Stanford University Hospital in California and medical director of its pituitary center, did not treat Angus but serves as medical advisor to the onlineAcromegaly Community.

"Everything gets thicker and the facial features become abnormal," he told ABCNews.com last year when Angus was speaking at a national conference.

Fluid accumulates in the body, causing stress on multiple systems in the body. Patients are more prone to cardiac conditions, hypertension and diabetes.

"They are in a lot of pain because they get severe headaches and their joints can be swollen and develop premature osteoarthritis," he said. "Their mortality rate is two to four times greater than the general population."

The disease is not hereditary and happens, "sporadically," he said.

 

"There is such a slow onset," said Katznelson. "Patients don't present with, 'I am getting bigger.' You look at photos and their history over 10 years and you see it. But when we look in the mirror every day, we don't see the changes."

At 21, Angus was a beautiful young woman who rode horses, danced and had a boyfriend. But one day, she noticed changes in her 5-foot-8-inch frame: Her shoes didn't quite fit, her jeans were too tight and her hands got bigger.

"She was perfectly normal, but by age 22 she had grown three inches," said her mother. "Nobody knew what was going on."

Tanya Angus
Courtesy Tina Valle
Tanya Angus (right), now 31, with her... View Full Caption
Hope for Tanya Angus Watch Video
Possible Cure for Woman With Gigantism Watch Video
No Surgery for Woman with Gigantism Watch Video

Angus, who lived in Michigan and was a supervisor at a Walmart, began to worry when even her face and head got larger. Her bosses also noticed -- and fired her. And her boyfriend left when his parents began to ask, "Is she a man?'"

Tanya decided to return home in 2002. When her sister picked her up at the airport, she "freaked out," because she didn't recognize Tanya.

The doctor took one look and diagnosed acromegaly.

But now, say Angus and her mother, new treatments are promising. "This gives us renewed hope," said Strutynsk.

And Angus, who has agreed to be part of a documentary on acromegaly, says she too feels optimistic, and encouraged by others.

"I read emails that people send in saying, 'You're my inspiration,' or, 'You are so strong.' If I am helping other people, I feel I can do anything."

For support, go to Acromegaly Community.

For more information on Tanya's story go to her website.

Girl with Acromegaly Sues NHS

on Thursday, August 30, 2012. Posted in Blog

By Emer Grey
http://pituitaryademoaner.blogspot.com

A story broke some time ago about a young lady with acromegaly who sued the NHS (National Health Service in the United Kingdom), and won. I've been meaning to write about her for a while but I wanted to take the time to create an interesting and informative post contrasting her case with that of Kane Gorny. Alas, I have not had the time, so you'll just have to deal with a dull and uninformative post instead. Hurrah!

The story is this: Kate Woodward, an aspiring actress, developed acromegaly (i.e. a pituitary tumour secreting growth hormone, which lead to uncontrolled growth of her body) as a child, which went untreated between 2001 and 2005 as medics failed to spot the condition. She attained a final height of 6'5" aged 20, and sued the NHS for £2 million. She was awarded compensation of £1.3m.

Incidentally, the award for "least sensitive headline about this story" goes to Healthcare Today UK, which went with "Freak Growth Woman Sues NHS".*

Nice.

Her case for being awarded this level of compensation was that, as a result of her condition being untreated for so long:

- Her height and "ugliness" meant that she could no longer go into a career as an actress.
- She has psychological difficulties and feels like a "freak" because of her condition.
- She has significant problems with her bones, knees and teeth, and cannot buy normal-sized clothes.
- The condition affected her childhood, schooling and friendships.

And, most significantly:

- She wishes to receive all future treatment in the private sector.

Now, not long after this story was first brought to my attention (by a colleague, thank you!) I noticed that it had also popped up as a topic of discussion on the Pituitary Foundation's forum. For those of you who don't subscribe, one member created a poll entited something like "Should Kate Woodward be ashamed of herself?" The results of the poll were overwhelmingly that she should (although in fairness by "overwhelmingly", I mean "there were four votes in total").

Why the anger? Surely she has a fairly good case, right? Undoubtedly, when a doctor is presented with a girl who measured 5'9" at just eleven years old and keeps growing, you'd hope that it wouldn't take four years to just Google it and think "hmm, maybe we should rule out acromegaly". Although we can't know that faster treatment would have effected a cure, it might have controlled or reduced the symptoms. She will have to live with injections and monitoring and joint problems and feeling self-conscious for her whole life.

BUT.

The problem is that this is not, actually, an unusual case - at least, not within the magical world of pituitary tumours. If every person with acromegaly decided to sue the NHS for delayed diagnosis, it would be one hell of a bonus day for lawyers. If you threw in people with other often-missed pituitary conditions like Cushing's Disease and TSHoma, it would probably result in a sudden UK lawyer shortage as they all retired to small Caribbean islands. If you based the level of compensation awarded on the number of years the condition went undiagnosed, the small Caribbean islands would probably reinvent themselves as world financial hubs.

I exagerate. But the mean length of time from onset of symptoms to diagnosis of acromegaly is,according to this MedScape article, around 12 years. Even if that estimate is too high, the point is that pituitary tumour conditions can be hard to diagnose, and they are often missed because they're rare enough that doctors don't see them often, and often don't expect to see them either. Four years to diagnose a patient with acromegaly is, sadly, not uncommon. I first showed symptoms of my TSH-secreting pituitary tumour aged 17, and I didn't get a diagnosis until I was 22. (In case you're bad at maths, that's five years). Even after my superfast heartrate made it clear that Something Was Wrong, it took a year to work out what that something was.

So if there's a slight lack of sympathy from other acromegalomaniacs,** it could be because they're thinking "Damn, £2m! Wish I'd thought of that." 

But I doubt it.  And I'm not just saying that because they're bigger than me.***

Now I want to note right off the bat that where there is evidence of medical negligence or it takes a long time to get a diagnosis, you should complain. Vociferously. You should complain in the hope that procedures can be improved. Otherwise there's nothing to stop future patients from suffering through the same tortuous process to find out what's wrong with them. But there's a difference between seeing a problem, taking a complaint as far as necessary to fix that problem for future patients, and just suing to get as much as you can out of them. Through the normal complaints process, the hospital in question offered Miss Woodward compensation of £700k, no court appearance required. If she lives to the age of 90, that would be £10,000 medical expenses covered every year. Additionally, according to the Daily Mail, which I personally take with a pinch of salt and under the supervision of a doctor, the hospital trust had already spent £288,000 on Miss Woodward for "treatment, dental care, holidays and special footwear".

Even the £500k difference between what she was offered and what the court awarded is a big chunk of money. £500k that could have gone towards treating other patients. I need somatostatin analogue injections (probably much like those Miss Woodward takes), and if you've been reading this blog lately, you'll know that it is proving slightly tricky to persuade someone to fund them. £500k could pay for 666-and-a-bit doses of those injections. Which doesn't sound like that much, until you realise that each dose lasts for a month, so £500k worth of injections would last me forfifty-five years. And six months. Assuming I needed them continuously. And of course by that point I would be 79-and-a-half, so chances are I could be dead by then anyway.

And here's the thing. If the NHS messes up and, as a result, you end up incurring further costs in your daily life (eg. you're a professional tap dancer going into hospital for an appendectomy, and you wake up with a leg missing) then yep, you should get compensation and if they won't agree to pay it, sue them with my blessing and encouragement. If the clinical negligence of your child at birth leads to brain damage which will affect that child for their entire life, then sue for the money needed to support them. And if/when the NHS messes up so badly that it becomes a danger to other patients, and you follow through that complaints process and nothing changes, sue them until they sit up and pay attention and mend their ways.

But I am somewhat uncomfortable with suing the NHS for the loss of a career that did not yet exist, and for the costs of having exactly the same treatment as the NHS provides, but done privately. (I'm also intrigued by the concept, since she presumably did not have private health insurance before diagnosis and consequently insurers would be unlikely to cover her pre-existing condition?).  I've had an MRI scan done by a private provider and done by the NHS and the experience was almost exactly the same - except the private hospital was a lot harder to get to on public transport.

I guess in some way I think that when the NHS messes up, part of the compensation is the NHS. The very fact that you live in a country where you don't have to worry about the cost of healthcare means that when the NHS makes a mistake, it - not you - ends up bearing any increased costs of your care as a result of its mistake. Perhaps in some countries when a patient gets a hospital-acquired infection, their bill from the hospital is increased - but in the UK, if a hospital gives you an infection, it has to foot the bill to try and fix it.

But it also means that when you sue an NHS hospital in the UK, you're not taking lobster off the table of a fat cat investor (well... not yet... comments about Mr Lansley on a postcard, please). You are taking money away from that hospital. Any sensible hospital trust will have a big old stash of contingency fund to cover the cost of lawsuits, but I still confess I'm uncomfortable with the idea of suing the NHS for anything less than an ironclad reason, because that money could be put to better use. It could be used to help treat someone just like you. 

I don't think Kate Woodward is a bad person, and I don't think she should be ashamed of herself. I simply don't have sufficient details to form an opinion on this case, and she may well be entirely justified. But she sparks off an interesting debate. That's my opinion. What's yours?

______________________________________
*I noticed Jon Danzig, a journalist with acromegaly, took them to task for this in the comments section of the article, good on him!

** I don't know what the collective noun for "a group of people with acromegaly" is, but it should really be this.

***Common misconception: people with acromegaly only become very tall if the condition develops during childhood/adolescence. If it develops in adulthood, it will lead to bone and soft tissue growth but usually won't increase height much, if at all.

ONE TIN SOLDIER

on Wednesday, April 18, 2012. Posted in Blog

After I was out of the hospital from having brain surgery I was told not to go back to work for two weeks, and I couldn’t travel because the doctors wanted me around in case anything happened.

Nothing happened, but it didn’t take much time for me to get bored. I was relatively new to the Internet at that time and there was an Internet café of sorts right in town, so I would go there a lot and play around. I recalled having seen a website called www.billyjack.com and thought I would check it out, seeing as how I had been a fan of those movies way back when.

There was a chat room on the site and even though I was kind of a rookie with the computer, I had a pretty good idea what that would be and I clicked into it, and there was a couple of people chatting who welcomed me. They were serious about their fandom of Billy Jack and the philosophies and all, but they would also talk about other stuff and anything that would come up, really.

There were more people there at night and I got to know many of them and it was great fun. One night each month Tom Laughlin himself would join in and you could get on the list to talk with him a bit.  Tom Laughlin, by the way, is the guy who made those films. He produced them and wrote them and acted in them and directed them. So it was a big deal when he came into the room, believe me.

I signed up one night because I wanted to ask him about a scene in Billy Jack, which, technically, is the second film in the series, the first one being The Born Losers.

Anyway, I asked him about the scene in the ice cream shop and if there were two dummies, mannequins, placed at a table to represent people.  He said no, but I don’t believe him, maybe he forgot. “Watch that scene and you’ll see what I mean.”

There was a big gathering of chat room people in Los Angeles one weekend and I flew out there to meet some of them. We had one big room reserved for us to hang out in and we sat and talked and drank lots and lots of beer. I’d never been in California before and was fun to be in a place you have heard about but have never seen.

The second day was the big one. That was when Tom himself would be there, accompanied by his wife Delores Taylor, who played Jean in the movies.

We all settled into the big room and everyone expected to hear a lot of stories from him, but he was actually more interested in hearing about us. So we went one by one and told our stories and when my turn came I talked about how I came to discover the website and all because of this acromegaly illness. While I was talking one guy interrupted me and Delores said, “wait, I want to hear more about Mike.”

That was a proud moment for me.

She asked about the acro thing and I told her what I knew, which wasn’t much at that time. Tom said, “But the tumor is benign, right?”    I told him it was and he said, “thank God.”  And that was another proud moment for me.

It was neat to sit there and talk with the guy who made those movies, silly though that may seem. I don’t know what exactly he thought of us, but he did say he did not completely understand the chat room thing or how it worked. When he is in there a woman named Robin does the typing as she relates the questions to him and he answers.

A few months later I was back in the hospital for my second surgery of the transsphenoidal variety and as it happens that was a night where Tom was due to be in the chat room, which I did not know at the time. Later on somebody showed me a transcript of the beginning of the chat and a friend of mine was the first to address him and she told him that I could not be there because I was in surgery but I say hello. He immediately responded, “Our Mike?  From Chicago?”

Do I need to say it? Proudest moment yet. He remembered me after all that time.

 

And now, of all things, there is a similar chat room, more of a support group of Acromegaly patients, with many lovely people who are there when you need them and even when you just want to say hello.

The Billy Jack room was fun. The Acromegaly room makes my life.

 

 

Reasons You or Someone You Know May Want to Consider Having Acromegaly

on Monday, February 20, 2012. Posted in Blog

By Mike Cookman

[Editors Note: This article is designed to be a of more humorous perspective on life with Acromegaly.] 

Being a brain tumor and all you might think that living with a chronic illness such as Acromegaly would be the last thing you want. But having had this thing inside me for so long,  I can honestly say I have found some positive aspects and I would like to share them, for better or worse.

For one thing, you can be referred to as “interesting looking.”  I was told this once by a woman I used to work with, in the D.C. branch of the bookstore that used to employ me, the first I had dated from said store, first of two, that is. The way she said it was like this: “I think interesting looking is part of the attraction.”

So, knowing that acromegaly alters your facial features, I can safely attribute this interesting look to this illness, would this have been said of me otherwise? I’ve heard it said the actor James Brolin was interesting looking so I will consider myself in good company, although he does not have acromegaly, poor guy.

Also, if you’re an acromeg, you will always have something to talk about. You’re out at lunch with a bunch of boring co-workers from the office and there is a lull in the conversation, and you can always fill it in with, “by the way, did I mention I have a brain tumor?”

Suddenly you’re the center of attention. Everyone is asking you all sorts of questions and there is plenty to say. And you can rest assured your name will come up all over the office for the rest of the day and you may meet just meet that special someone.

Side note: don’t bring it up on a date. Save it for the next morning, over even the next.

And, speaking of work, you ever feel like going home early or not going in at all? Acromegaly is there for you.

“Hey Joe,” you say over the phone, “I can’t make it in today.”

“Why the hell not,” the boss asks. “Don’t you know we have lots of meetings today?”

“Well, it’s a brain tumor thing.”

“Oh, okay, uh, see ya.”

It’s as simple as that.

 

If you’re into magic or any other sleight of hand trade, you’re in luck, because acromegaly causes your hands to get bigger, easier to hide things. Let’s say you are a card cheat and you wish to hold out some cards. Those large hands will really come in, eh, handy. And if someone gets angry and accuses you of cheating you just bust him in the head.

Seriously, though, you get to meet a lot of nice people. Acromegalics are the nicest people in this or any other world. We all share our experiences with each other and lend support to someone who is feeling down, which is not uncommon with an illness like this. So don’t mess with an acromegalic or you might just find yourself with a busted head.

 

Life Happens... Work Around it!

on Friday, June 17, 2011. Posted in Blog

Wayne Brown

AcromegalyCommunity.com

 

 

Life happens.  In this day of smartphones, a dizzying news cycle, and endless apps designed to make us more productive, it is easy to be overwhelmed by the information avalanche.  This is why we need to be responsible patients, making sure we are actively taking good care of our own health.  Frequently in my articles and speaking opportunities, I remind patients that they need to be their own greatest advocate in the doctor’s office.  That is still very true, but what is equally important is for the patient to be their own best advocate!

As the global economy tightens, the job market gives employers greater ability to expect more from their employees at the same, or even lesser wages.  Still, just because our bosses can demand more of our time and energy, it does not mean that we can offer less at home when with our families, friends, and loved ones.  Now, as if your mountain of responsibility was not tall enough, throw on top of it your medical struggles.  Simply put, something has to give somewhere; but as the patient, you need to make sure that your health is not where the sacrifice comes to be.

Look at your health like you are building a house.  Why do the builders invest so much time in making sure that the foundation of your home is perfect?   Depending on your home, it can take almost as long to set the basement foundation as it can to build the rest of the home.  Why?  Because if the foundation of your home is weak, the rest of the structure can eventually collapse in on itself.  You need to build your life with the same care used to build your home.  The foundation of our lives is our health.  If your health is not well built, or well maintained, it weakens.  The weaker the foundation, the more you are vulnerable you are to stress; making you less healthy.  Before you know it, every other aspect of your life comes down upon you.  Your work suffers, home life is more stressful, and things are generally unpleasant.  When your work suffers, you risk your source or level of income.  When your relationships suffer, your emotional well-being suffers drastically.  Each stress in your life is another major crack in the foundation of your life.  So… lets keep your health in order.

This morning, I was confronted with the importance of advocating to yourself for your own health.  I have a smartphone with a calendar built in, and I also have a calendar on my office wall.  Why?  Certain dates are too important to be trusted to technology alone, and I want to see every important date in my face as much as possible, so I cant help but remember to do it.  One trick I use is that every other Friday, I either have to order my medication, or administer said medication.  Normally, this is easy to remember.  This month, not so much.  Work has been running me ragged, and I actually do have a personal life outside of work – sometimes!  Anyway, as the stress piled up, I forgot that today is “Shot Day.”  Boy, was I was surprised when I was heading to the office today and my cellphone told me I forgot to take my shot before I left for work today!  So what would happen if I forgot today altogether… Would being a day late kill me?  No.  But tomorrow I have a full day planned, and Sunday is Fathers Day.  Whole weekend gone in a blink.  Its amazing how easy it is to forget to do the important stuff that is not as fun to do! It makes me glad that I have reminders in my cellphone for 6am, and then again at 930pm.  As a patient, you do what you need to in order to meet your own medical needs.  After all who knows your better than you do?  As patients, we expect our medical professionals to take care of our health, but if we don’t take care of our own needs, how can we get mad at strangers when our health wanes?   The doctor is healthy, and no matter how much he or she cares, they probably cannot feel your aches and pains!

So how do we advocate for ourselves to ourselves?  #1… TAKE Y0UR MEDICATION ON SCHEDULE!  If you wait until you don’t feel so well, your body already feels sick- it just took a while for you to figure it out!  Why punish yourself?  Just take your meds on time. If your memory is an issue for you, make sure you write reminders down in multiple locations, put your drug where you cant help but find it, post yourself reminders, put it in your cellphone calendar, on the fridge, notes in the bathroom, even a string on your finger if that works for you… whatever you need to do to remember!  What else?  Keep a journal of your symptoms.  If you don’t feel well, keep track of it.  What were your symptoms, when?  Was it in relation to a medical treatment or procedure (or expected treatment or procedure)?  When you go to see your medical professional, make sure you bring your journal and share it!  Medical people are scientific.  Dates and accurate descriptions makes treatment and diagnosis easier for them.  Something that may seem unimportant to us, might be a clue to them- or a sign of some underlying new issue.  True, your doctor might think you are a hypochondriac… but if he or she is thinking that now, it is probably not a new thought; and maybe it is time for you to have a heart-to-heart with your sawbones; or tell your story walkin’… to your new doctor’s office.  It is unlikely that you signed a contract of treatment with your doctor, so you are allowed to find someone who better meets your needs!  And finally, listen to your body when it tells you something is wrong- its not lying!  If you are not feeling well, try to figure out why and fix it.  this doesn’t mean that you take a week’s medical leave because of post-nasal drip.  Lets be reasonable.  Sometimes heroes need to play through the pain.  If you feel lousy and can still gut through work, do it!  Where you can change things up are the less important things.  When you get home from work and your child wants to tell you about their day, you need to listen.  Also very important!  Where you can cut--- sacrifice means that if you can avoid it, skip the errands.  You don’t have to go food shopping today to get a gallon of milk and a stick of butter, or go to the post office for $1.80 in stamps, or, and see Auntie Shirley who you know is going to nag you about finding a husband/wife or how you raise your kids/cats.  That is the kind of stuff that can wait for a better day.  In all honesty, the errands will all go phenomenally easier if you are in a better frame of mind anyway.

So be your greatest medical advocate to yourself.  Take care of your health so you can keep the rest of your life going smoothly, which will naturally lead to better health… what a neat circle.  Do yourself a favor; after all, who deserves one more?

Wayne Brown is the founder of Acromegaly Community; a group focused on patient advocacy, and was the lead writer for the collaborative book Alone in My Universe: Struggling with an Orphan Disease in an Unsympathetic World.  He can be reached at  This e-mail address is being protected from spambots. You need JavaScript enabled to view it  

Are Patient Needs Being Met For Acromegaly Patients?

on Friday, June 17, 2011. Posted in Blog

The following is an editorial written by an acromegaly patient.  The opinions, beliefs and viewpoints expressed in this article are those of the writer’s.  Their beliefs and viewpoints are strictly their own, and do not necessarily reflect the viewpoints of Acromegaly Community, Inc, or any of its agents.


 

Raymond Carawan
Member
AcromegalyCommunity.com
 

Acromegaly patients across the globe are their own best advocates, and working together can provide much needed changes and medical advancements. Many Acromegaly patients believe that it is overdue for informative pieces on acromegaly to be written by someone who has acromegaly and has related to multiple acromegaly patients. With these kinds of writings, as well as testimonials from acromegaly patients then and only then can the outside world truly understand what acromegaly is and how its patients are affected. Also, the acromegaly patients need to write these pieces to gain the necessary awareness and make changes. The article below has been written by an acromegaly patient. The information also been gathered by members relating symptoms and experiences to one another through the help of AcromegalyCommunity.com.

Acromegaly is a chronic, rare, serious, and at times, fatal disease. It is caused by a tumor on the pituitary gland or rarely another location in the body. This tumor in particular causes an increase in growth hormone and a chemical igf-1 and sometimes results in other pituitary and thyroid functions. There is no known or guaranteed cure for this disease mainly due to the fact that the tumor can come back and that igf-1 can remain high even though there may not be a tumor present any longer.  That’s not to mention all of the persistent side effects and damage left behind from the acromegaly. That of course pertains mainly to those who have successfully reached so called remission in which many consider to be where there is no tumor present and the growth hormone and igf-1 have reached and maintained a normal level. Those who have not reached the "remission" stage are not so lucky however as their bodies are still taking on damage from disease. The side effects from this disease are numerous and extensive some of them come on slowly some of them rapidly, some mild and some intense, this varies from person to person and what their individual situation is. The side effects are as follows on the list below:

•   skeletal deformity(mainly in the forehead and cheek bones)

•   decreased vision

•   massive sweating especially in the hands and face

•   high blood pressure

•   possible diabetes

•   possible heart attacks..

•   organ enlargement

•   weight gain(a lot of it is water weight)

•   increased risk for other morbidities(such as cancer, kidney disease, etc.)

•   increased risk for various types of arthritis

•   increased chance for joint problems like shoulder injuries and back problems neck

•   premature death if untreated or if another morbidity is present

•   mental instability and/or conditions in some patients

•   bowel movement problems

•   colon polyps

Many patients experience a wide range of symptoms and side effects that are not on this list. They are not on this list because there are so many of them that it would take pages to document. Another reason that they are not on this list is because a great deal of doctors will tell their patients that these symptoms are not from acromegaly or that they are being hypochondriacs. Most of the patients on patient-centered websites will testify to having sleep disorders, digestive problems, low energy, chronic medical fatigue, poor balance, low quality of life, and many more side effects that drastically affect their everyday lives. Many acromegaly patients never receive the help that they need in its entirety and many of them believe that is due to doctors and scientists not really knowing the full extent of how this disease can affect each individual differently as well as not having a collective database with massive interviews with acromegaly patients. This is a huge doctor/patient relationship problem because if multiple acromegaly patients have similar complaints about how the disease effects them, but the doctors don't recognize that, and those are problems that are due to a lack of research.... then there is a huge deficit for information about this rare disease.

Another major problem that acromegaly patients face is insurance issues, especially on Medicaid in the United States. There are multiple reasons why this is such a humungous problem. The first reason is that Medicaid patients in some states in America do not have the luxury of doctor shopping to try to get the best possible care. In those states very few doctors even accept Medicaid anymore; and those that do are usually not the best doctors for an acromegaly patient. Therefore, if a patient is on Medicaid and is lucky enough to find an endocrinologist or neurosurgeon, they have to stick with that doctor no matter what, just because of the way the insurance is set up. There are a lot of different insurance companies where patients have that problem. Another problem is that Acromegaly is typically not listed as a special care disease (so to speak), like cancer or MS thus insurance companies are not as willing to work with patients on bills and treatment plans and much more. The biggest insurance problem that acromegaly patients deal with is by the time they find out they have the disease they are not able to find a suitable or affordable insurance plan if they did not previously have insurance. This is largely due to the fact that it would be considered by many insurance companies to be a pre-existing condition (if they are not currently insured). Also, the insurance companies do not realize all of the details of the disease and what they need to cover.

One last major issue is the lack of awareness in the community, in the government, and in the medical field. Acromegaly patients do not see the same support and backing that other rare diseases see like cancer, MS, and many more.

On behalf of acromegaly patients worldwide, and as an acromegaly advocate/patient, I would very much enjoy and appreciate a stronger push in the government and medical fields to increase research on this disease, and to fix or solve some of these problems that acromegaly patients face. Just as it was with every major rare and serious diseases discovered and supported before, it takes a joint effort between the government, medical, scientific, and general community to achieve the maximum support, research, advocacy, and success for this disease. I would like to thank all who have donated their time, money, help, support, and research already and those who continue to do so. I would also like to have you know that many patients have benefited greatly already from your support. Please keep up the good work and continue helping us make acromegaly an easier disease for patients to live with and maybe one day with the right changes and support find a permanent cure for acromegaly and for all patients.

 

 

Taking a Lesson From a Tragic Loss

on Wednesday, June 15, 2011. Posted in Blog

Wayne Brown
AcromegalyCommunity.com

Last night I was at an open-air concert; and while waiting for the show to start, I was unexpectedly faced with mortality.  Everyone at the show was fine, but when I was reading social networking posts, I kept reading people’s messages of peaceful rest to a woman I didn’t know; but I could totally relate to her struggles with a rare disease.  Sarah, a young woman dealing with the effects of Cushings Syndrome, passed away from a head cold- a medical complication at the ripe old age of 28.  I didn’t need to know Sarah to know that this was just wrong!

Based on what I have read from many of Sarah’s friends, I got a brief snapshot of the situation.  Not only was she a very special woman that many people loved, her passing was made more tragic because maybe it was avoidable.  It seems that several people were concerned that the quality of her medical care was at least partly to blame for her early passing.  Now I did not know Sarah or her issues to agree or disagree, but it brings up a really important topic of discussion for the rest of us: what is a good relationship with your medical professional?  For those who are unfamiliar, Cushings Syndrome is a hormonal disease that impacts people who have a consistently high exposure to cortisol (a hormone released into the body as a response to stress).  I have had cause to learn a lot about Cushings because of the number of Acromegaly patients who have to juggle the effects of both diseases.

While I know this discussion can be uncomfortable, I would like for you to ask yourself honestly: DO YOU TRUST YOUR MEDICAL PROFESSIONAL?  Please understand the question I am asking is different than whether you like your doctor.  While it is nice if you like your doctor, it is not as critically important that you like your doctor, as it is that you trust him or her.  I promise you that I am not golfing buddies with any of my medical professionals; but… I am confident that they are providing me with the best possible medical care I could ask for, without my traveling to a dozen other cities.  Ultimately, this is an essential question you need to answer for yourself because your answer can directly impact the quality of your health care, and therefore the length and quality of your overall life.

Now does trusting your doctor mean they know everything there is to know about all things medical?  NO!  Just because you trust your doctor or nurse does not guarantee that they know everything about every disease you may ever have.  Willingness to learn accentuates, not lessens a doctor’s credentials as a diagnostician.  Many of us have had cause to teach our doctors something about our disease not covered in the textbooks yet.  When I was growing up, I knew a doctor’s wife who used to love to joke that ‘that’s why it’s called practicing medicine.  They have to keep trying till they get it right.’  It is impossible for any one medical professional to know everything about everything.  The question you need to answer for yourself is whether you trust them to listen to what you say and help you to make your life more pleasant, because of or in spite of your medical situation.

Sadly, for some of us, our medical issues are not a joke but a depressing reality- that we have to go years before we find the right medical professional who can both treat us medically AND handle our personalities in a way that will help us to trust our doctor/nurse/physician assistant.

Now, if it is true that the doc is merely practicing, why is our trusting them so essential to the relationship?  That is simple.  Honesty.  If you are anything like me, you would rather go to a medical office than a psychic for your medical care.  If you are withholding from your doctor, for any reason, you are detracting from your own medical care - and making it nearly impossible for your doctor to properly treat you!  I am not saying you should call your doctor’s office because you stubbed your toe getting into bed last night and your nail is bruised in the morning, but if you stubbed your toe last night and you were in so much pain that you woke up and took seventeen aspirin, this is an issue worthy of a chat.  Your medical professionals need to understand who you are, how you feel, what your pain threshold is, and how you manage your medical issues when he or she is not around (yes, this means your OTC treatments AND if some of your self-treatments do not necessarily come from recognized pharmacies- while this may be an awkward conversation and you may get scolded, such decisions by you can effect your treatment too!).  Medical professionals and their patients must know they can trust each other.

Ultimately, we are the patients- its kind of like being the customer at a store.  If you want to do hours of research before you buy the best can opener, or if you want to consistently look over your doctor’s shoulder, that is your right; but ultimately you need to have faith in the purchase you make at the store, just as you need to have faith in your doctor’s course of treatment.  If you do not feel comfortable enough doing that, then you have a decision to make: is your lack of trust in the doctor their fault, or is it yours (as the patient)?  Again, not an easy question to honestly answer, but essential in our long-term well-being!  If you have been withholding too much from the doctor, waiting for the doc to miraculously figure out what’s wrong seems both unlikely and unfair- and largely a mess of your own doing.  Going to another doctor is simply going to slow your treatment, and likely perpetuate the problem.  It is not the doctor’s fault that you are not honest with them about your issues.  Open up with your doctor and have a frank discussion- see where things go from there.  But if you are honest with your doctor, and you still feel like the doctor is either uninterested, unable or unwilling to figure out your issues, or is flat out too busy to give you the focus you require and deserve, well then you need to look at possibly seeking a new medical professional.

Just remember, starting with a new doc can be difficult.  If he or she is popular, you might wait at least a month or two just to get that first appointment where no treatment might legitimately get started. During this time that you wait, your issues are not being treated at all.  On top of that, you and your new doc both need to figure each other out, and again you need to try to build that trust and understanding with a new doctor and staff, working toward a momentum of medical stability.  All that being said, if you are not happy, and are ready for the switch, then go for it!  Remember, you are most responsible for your own medical care, since you are the person most greatly invested in your own well-being!  Don’t stay with a doctor simply because you are afraid to leave.  If you are ready to move on to a new doctor’s office, just make sure you are doing it for the best reasons.  Hopefully your new doctor’s office will offer you the ability to trust and be totally forthright.

I am just saying that if you are dealing with some sort of extraordinary medical condition, please invest your time to be totally honest with your physician(s).  Talk with him or her in a frank and honest way.  If your disease has major issues that are kind of sensitive to talk about, and you are afraid to talk face-to-face with your doctor but feel you can be more frank with the nurse or physician assistant, then do that!  If the issue is particularly awkward for you, then at the very least, keep a journal and share that with your doctor’s office.  At least the information is being conveyed.  While there are preferred methods of sharing, getting the information is more essential than the method of delivery.

I don’t know what the facts are that surround Sarah’s case, but it is a tragedy any time a 20-something person passes away.  Don’t let her passing be for nothing.  We can learn from her.  Take care of yourself medically, and work to foster a relationship of openness and trust with your medical professionals.  Without trusting our medical professionals, how can we expect them to treat us in a way to actually improve our health?  And at the end of the day, what is more important than our health?  Dare I say it… nothing.

Happiness Is Great... Not Necessarily Permanent!

on Wednesday, June 15, 2011. Posted in Blog

Wayne Brown
AcromegalyCommunity.com

It’s been only a few weeks since Acromegaly Community’s first annual It’s About The Community! conference came to a close, and when I sit back looking at photos and embracing memories made during this trailblazing weekend, I cant help but get a huge smile on my face.  I truly hope that all of our great members and guests are still feeling as great as I am.

From the moment the first person walked into the Friday night cocktail party, we all knew that something very special was taking place.  One could not help but be overwhelmed by the positive vibes washing over everybody as soon as they walked into the room.  While I am not sure there are any official numbers, I am confident in saying that this was the largest collection of Acromegalic patients, ever collected for an Acromegaly-centered event!  Throughout the weekend, almost everyone, no matter what their stage of medical treatment, was smiling and laughing.  The reason for this happiness was simple: patients realized they were not alone, and their loved ones had a whole new appreciation for what their loved ones deal with- on a daily basis.  Our initial goal with this convention was to help people shrink the circle surrounding them, making then feel less lonesome and more supported- I think we overwhelmingly accomplished our goal!

Here is the problem… After the conference ends, real life is waiting for us- sometimes with a really painful smack!  The thing about motivation and positive thinking is that it doesn’t last forever.  In the words of motivational speaker Zig Ziglar, “People often say that motivation doesn't last. Well, neither does bathing - that's why we recommend it daily.”  As Acromegaly patients, we need to be aware of our emotional fragility at times, and figure out the systems that best help us battle the lonely and sad days.  This disease can get the best of us, if we let it.  Our job is to make sure that we do our individual part to figure out what individual coping mechanisms work best when times are not going so well for us.  Me personally, I need to start each workday with a good workout.  Some days are better than others, but getting the adrenaline going helps to set the tempo of a great day--- and if I am stressed about something, taking my anger out at the gym is safe and healthy! This can only help to make my whole day better.  I also love a good laugh; so when the day has not been going so well, I have my favorite entertainment sources I know I can depend on to get a chuckle.  Most importantly though, I have great friends; some are fellow patients, and some have nothing to do with the disease at all.  Most of the time when we talk, the LAST THING we want to talk about is the disease.  It is more fun to talk about sports, politics, the weather, or what stuff is going on in their lives; anything to NOT think about my disease.  Now these are some of the shortcuts that work for me.  It does not mean they will work for you.  If you like to talk about your medical issues, that is good.  If you hate sweating, the gym is probably not a good place for you.  Just experiment to figure out what puts a smile most easily on your face!

If you were in Las Vegas for the Its About the Community! conference, we talked about all sorts of great ways to improve your life and work around the disease in a lot of different ways; both medically and personally.  We also, and almost more importantly, made a lot of new friends and established new contacts.  Reach out to your friends.  Make new friends great friends.  Call them and enjoy reliving good times, and talk about a great potential future!  Figure out what works best for you when you are low, and do what you need to do to pick yourself up when you are low.  When you have a smile on your face, everything feels better!  If you need more ideas, reach out to your friends in the community.  Brainstorming a smile is time well spent.  If you did not make it to Las Vegas, do your best to be at next year’s convention.  Your being there will help everyone have a better time--- including you!

Remember, positive vibes don’t last forever.  The trick is to not get scared by your sadness.  Figure out what is the impetus to the unpleasant mood is and fix it as quickly as you can.  If you cant fix the root of the problem, try to add happier things to your reality that can help you smile more easily… you will be amazed how this will improve your current struggles.  You bathe daily, try smiling daily too… you will feel better, I promise!

Don't Be Miserable... Just Because

on Friday, April 22, 2011. Posted in Blog

Your Bad Day Doesn't Have to be Mine Too!

Wayne Brown
AcromegalyCommunity.com


      There is a strange phenomenon going on in the world today… this idea that people can and should say any thought that falls into their heads.  Personally, I just don’t understand it.  I know that I regularly talk about how we appreciate our loved ones being understanding when we are having a bad day; but we have obligations to the people we care about as well.  As Acromegaly patients, we know when our body is off, and unless your friends and family are psychic, simply being in our presence does not offer any clues as to our emotional issues of the day.  While our bad days can be really ugly, this does not give us license to mow through everybody in our lives, with a simple apology the next day.  Remember, “sorry” is not ketchup, offering to cloak the bitter flavor or your mistakes.

      Years ago, when my sister’s children were just learning to communicate, she would frequently say to them “use your words” when they had a lot on their minds, but were not sharing their thoughts effectively.  This had spillover into our relationship, and occasionally I would be told the very same thing if I started to say something, but stopped because I knew it was overly negative or hurtful.  While my quick wit would have offered me a moment’s catharsis, it would not have helped our relationship.

      As patients, when we are communicating in person or over the phone, and we know we are having a bad day, we really need to be aware of what we say BEFORE it falls out of our mouths and into unsuspecting ears.  It’s the old construction rule: measure twice, cut once.  If you are thinking something driven by emotion, think before you speak.  If there is any doubt of how your thought will be interpreted, either rephrase or just don’t say it!  You are under no obligation to share the black cloud of your day with the people you care about simply because they should understand.  There were several times when my sister would say, “use your words…” when I had several choice ones in mind and instead I would shut my mouth; mumbling that I am not speaking BECAUSE of my words.  Sometimes chewing on your tongue does more to help relationships than anything else!  All this being said, if you are in a relationship where the other person is constantly running you down, this does not mean you have an obligation to be their doormat.  What I am saying is that NO ONE has the right to belittle another person just because they are feeling badly about themselves.  Now, verbal communication is not the only communication that takes a hammering when we are not happy…

      The beauty of the Internet is that you can say whatever you want, in relative anonymity… The worst part of the Internet is that you can say whatever you want, in relative anonymity.  Unfortunately, the person who is reading what you are writing also has thoughts and feelings, and they do not have the ability to read your message with the same thought and tone with which you wrote it.  If you wrote something jokingly, or implying some sort of sarcasm, the message probably did not connect as you had intended.  Until Microsoft creates a sarcasm font, keep in mind that only about 3% of communication is actually the words we use; the rest is tone, body language, facial expressions, and pace.  This is something that WE ALL need to keep in mind when communicating in written form. If you have ever had an argument based on something written in a text message, Instant Message, email, or other written communication, you know what I am talking about!   When I have an important email to write where I am not happy, I will write it in my word processor, walk away, and read it again when my emotions have settled.  THEN I edit as necessary.  Heat of the moment has caused more problems for more good relationships than most other issues.  And the Internet never forgets!

      Do you have relationships that are already stressed?  Intentionally causing pain to the person you are struggling with is not going to lessen that pain.  If the relationship is so bad that you don’t care, then you have to make some serious decisions that might make your life better in the long-run.  But if this is someone you care for and would like to continue to have in your life, think about the message you are going to convey BEFORE you have to apologize for it.  At the end of the day, it will make both of your lives far happier.

Wayne Brown is the founder of Acromegaly Community; a group focused on patient advocacy, and was the lead writer for the collaborative book Alone in My Universe: Struggling with an Orphan Disease in an Unsympathetic World.  He can be reached at  This e-mail address is being protected from spambots. You need JavaScript enabled to view it  

Weathering The Storm of a Bad Day

on Tuesday, April 12, 2011. Posted in Blog

 

Wayne Brown
AcromegalyCommunity.com

 

“You're playing and you think everything is going fine. Then

 

one thing goes wrong. And then another. And another. You

try to fight back, but the harder you fight, the deeper you sink.

Until you can't move... you can't breathe... because you're

in over your head. Like quicksand.”

 

---Shane Falco (Keanu Reeves) on “The Replacements

 

No matter how optimistic you think you are, no matter how much you look at the glass as half-full, and no matter how rosy your glasses are, bad days are bound to happen.  In fact, I would venture to say that if nothing ever goes wrong in your life, you are not living a very full life at all.  Living a full life involves taking chances, and calculated risks, but when you do take those chances, there is always a probability of error.  The difference between long-term success and long-term failure is how you respond to the setbacks you face.

Here is a quick suggested guideline on how you might most quickly weather the metaphorical storms of your life, and even end up on higher ground after everything settles:

1) Do you have an umbrella? This morning as you were getting ready for work, the weatherman called for monsoon conditions, but you were not listening; all proud of your brand new suit you were going to wear to impress the boss.  When you stepped outside, it was a beautiful morning, so why not walk… The exercise is good for you, and its just a mile or two to the office!  Halfway along your walk, the skies open up!  You are being drenched!  Oh man, you didn’t need this today!!! Priority #1 is key:  how quickly can you stop getting wet?  We can’t stop the rain, but we can choose how we respond to it.  If you have an umbrella, this is a quick, easy, temporary solution.  If you don’t have an umbrella though, you still have a real problem that needs immediate attention, and improvisation is essential!  Get into the nearest building, car, taxi, or other permanent structure, so you would have at least a temporary solution to your problem, right?  When faced with a problem, the best first step is to figure out how to at least temporarily fix the problem.  While the shortest term solution may not fix the entire problem, it will offer you the ability to focus on a stable and strong long-term solution.

2) What caused my storm? This is not always comfortable to identify.  Evaluating our own missteps can be uncomfortable and frustrating.  If you checked the weather on the internet, radio, or tv, you may have driven to work, brought an umbrella, or taken some other evasive maneuver.  So many times we let ourselves get caught in life storms that were at least minimally predictable.  Keep an eye down the road of life.  While dealing with the “boring stuff” today may not be ideal, think of the long-term benefits.  Fixing a worn part of the roof during the sunshine may be more expensive than we would have liked, and not a whole lot of fun… (besides, its not really a hole.  I will fix it when it becomes more serious). We all have these worn spots in the houses of our lives.  They may be interpersonal relationships, finances, medical concerns, or whatever is loitering in your mind while you read this.  Here is the thing… it is easier, quicker, and far less expensive to do quality repairs before the storm hits, exacerbating previously minor problems.  So once you figure out what caused your storm, we need to focus on fixing it.  Don’t beat yourself up, just figure out why it’s raining, how hard its raining, and how we can most easily and quickly get dry and cleaned up!  You might need to bring in experts to help you, but if it helps you fix the problem, it is money well-spent.  The point of figuring out where the problem stems from is not for purposes of assigning blame; but rather to figure out what the root problem that needs doctoring.  Once you clearly know and understand what the most obvious problem is, you can work to repair it.  After you get past the obvious problems, you may find other issues beneath the surface.  This is great!  Fix them now, if you can, before they have the opportunity to cause their own problems!

3) Shelter yourself until the storm passes. This does not mean you need to ignore the problem until it goes away.  It means you need to protect the most important people in your life.  It’s not your family’s fault that you got wet.  This is important to remember!  When in the throes of a bad day, it is easy to lash out at others.  Just because you are feeling overly sensitive, does not give you license to prop yourself up by stepping on the necks of the people you most love.  For whatever reason, we find it easiest to verbally abuse the people we really love the most.  If it is our storm cloud, we have a responsibility to screw on a smile when dealing with others.  Taking out your bad mood on people not responsible for your problems is only going to get them defensive around you, and exacerbate your already bad day.  And if a person you love is also partially responsible for your storm cloud, you still have an obligation to deal with the person in a way that is fair to both sides.  Saying or doing things that will intentionally incite the other person just so you can have the upper hand is manipulative, cruel, and just plain wrong.  If you have a close friend or sympathetic spouse that will let you vent, that is ideal; but don’t abuse them just because you are not happy at the moment.  Simply dealing with your frustrations by kicking the dog will probably result in Rover biting you.  Not only will you deserve the bite, but that will just bring more storm clouds as you now have to undo even more problems!  The bad day will pass, I promise.  If you can’t control your emotions or your tongue, remove yourself from the situation.  While that may still be rude, and may lead to other problems down the road, lashing out in anger causes even more long-term problems.  Remember, one second’s demeaning comment to your spouse, child, co-worker, or peer, can cause a lifetime of pain for that person, and awkwardness between you and them.  Moreover, words are very powerful, and frequently more powerful to the recipient than the speaker.  Not only is it impossible to un-hear negativity, it is not fair to throw someone you love into their own rainstorm just because you are having a bad day.

4) Build a permanent structure. After things have settled a little, and you feel like you can breathe again, now its time to work on preventing your storm from returning.  So many of our problems are caused by our own actions, or inactions.  The trick is to learn from our mistakes.  Learn your lesson, but don’t wallow in your misery one second longer than necessary!  Sometimes, when we are drenched in the storm of a problem, it is easy to torture ourselves.  “If I had only done…”  Okay, well playing the what-if game is a waste of time right now, and it is simply too late for resolving the problem yesterday.  So after your problem has been rectified, or at least slowed, immediately start working on a long-term solution- ESPECIALLY if you already know what that solution is!  Again, this may be a financial issue, relationships with loved ones or peers, or even your health.  Take the time to take care of your biggest issues first.  And if you find there are a number of aspects in your life in need of more permanent structures, sit down and figure out your priorities.  To me, health should always be the top of the list.  If you don’t have that, the rest of the list just doesn’t matter nearly as much (but that is just my opinion).  If you have a family, make this a family event.  Your storms are your family’s storms too.  And if you have issues that you are concerned about, make sure everyone feels comfortable moving forward.  The comfort of having a plan of attack on life offers its own long-term stability; when things get rocky, you can always go back to the plan.

 

5) What caused the storm? The storm has passed.  You are breathing easier now.  The best thing to do now is to sit back and take a real inventory.  Take the time to really figure out what caused all the problems.  Not every storm is an emergency of epic proportions, but they all have their own factors that need to be honestly examined.  This can be the hardest part.  What did you do to contribute to the storm, for good or for bad; and how could you have avoided the storm in the first place.  Sometimes, the storm was inevitable.  That happens.  Still, there is always some lesson to be learned.  Take the lesson.  Internalize the lesson.  Gain the knowledge.  Then, most importantly, dismiss the pain.  Pain, anger, and negative energy is utterly toxic, and if you allow yourself to marinate in negativity, it can envelop your entire being.  Negativity draws storm clouds.  Happiness is a choice, and sometimes it is a difficult choice to figure out, but in the long run, your life will be stronger for it.

 

It may sound strange to hear, but if you learn how to manage your setbacks, instead of letting the setbacks steer your own life, you will find that the major life challenges you keep facing become far easier to manage.  Of course problems will still show up.  Even people with the most mundane lives have challenges (sometimes more).  And yes, taking chances sometimes has negative results to it, but when risks pay off, they can be huge!  Seize your life, you only get one shot at it.  Even when things go badly, managed properly, your life will be richer than it was before.  Knowledge does not come to us easily, but it enriches and fulfills our lives.

Don’t be afraid of bad days.  They are great learning opportunities, if you make sure you are learning from the experience.

Wayne Brown is the founder of Acromegaly Community; a group focused on patient advocacy, and was the lead writer for the collaborative book Alone in My Universe: Struggling with an Orphan Disease in an Unsympathetic World.  He can be reached at  This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Good luck, and I hope this makes your day better!

Alone In My Universe...

on Thursday, April 07, 2011. Posted in Blog

Real People Come Together to Realistically Discuss Their Rare Disease

Wayne Brown
AcromegalyCommunity.com

Alone in my universe… What a desolate thought to describe one’s life.  The idea that someone can be surrounded by people who love and care about them, yet still lack the ability to feel almost any sensation of understanding or support is incomprehensible to most individuals. But for many people struggling with a rare disease, it is just their reality.

When I was first diagnosed with Acromegaly in 2005, I though this was going to make my life so much easier; after all, it seemed like ages that I was complaining ‘I just didn’t feel good.’ Strangely though, being told that I had a tumor in my head ended up being a pretty bad day! Since diagnosis, surgery, and treatment, a lot of time has passed, and I have learned many different coping mechanisms and work-arounds for bad days with the disease. Some of what I have learned was self-taught, but I have also learned a lot from the wonderful people I have met along my medical travels. In 2006 I started to develop several message boards on various social networking websites including facebook and myspace, and over the years we have built a fiercely loyal group of supporters. When I need medical support and encouragement, these are the people I generally turn to first because they understand my reality the best.

When I first started to write Alone in My Universe: Struggling with an Orphan Disease in an Unsympathetic World, about two years ago, my goal was primarily focused on trying to exorcise my own loneliness demons. But as I started to develop the project more seriously, I discovered that my own story alone could not sufficiently fill the information void that most people live with.  Acromegaly has so many nuances and individual issues that one person’s story alone would scarcely scratch the surface in a quality book.  This is when I turned to my friends for support. I went to the different message boards and shared my idea, looking to see what the response would be.  Would people be willing to open their most personal struggles to the pages of a book? I could not have been happier with how eager people were to participate in my little project! People were only too happy to share their own individual stories. Stories focus on everything from loneliness, isolation, and confusion; to the unspoken truths of surgery, to several humorous anecdotes. The focus while writing the book was to build a metaphorical flashlight others could use to cut through the pitch-blackness of isolation and fear.

What we finally compiled was a very special and unique collection of personal stories that are honest and inspirational. This is a book filled with laughs and tears.  Empathy for other patients, and explanation for people who are not actually personally afflicted by the disease but know someone who is. I am proud to say that all the feedback we have gotten so far has been absolutely radiant. People are reading the book and just devouring the information and support.

This book, while focusing on one specific rare condition has been written with the goal of providing help, support, and information to anyone dealing with their own medical fears and frustrations.  After you read this book, I encourage you to spread the word. It is through our shared experiences that we will truly be able to do battle against that feeling of being totally alone in our own universe.

Click on the book cover's logo to be able to order our book and learn a lot about Acromegaly from the people on the front lines of the disease. 

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