Articles tagged with: gigantism

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.

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.

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.

 

Defending the Rights of ALL Patients, Living and Dead

on Tuesday, December 27, 2011. Posted in Blog

Wayne N. Brown

 

Death.  The ultimate unknown.  People fear it because we literally have no idea what awaits us.  For this reason, it is the ultimate honor of trust when a person asks someone to execute their final wishes.  In the 1780’s, while the people of France and the future United States fought for their individual rights, one man in London got double-crossed by the people he trusted to enforce his wishes into death; and just recently, in 2011, got those same wishes betrayed again, in the name of science--- again.

Charles Byrne, more famously known as the “Irish Giant,” paid his bills by essentially selling his privacy to work for Cox Museum as a sort of local “freak” at 7 foot 7 inches.  His height was even more intriguing back then than it is today.  With a median height at the time of about 66 inches tall (Health and welfare during industrialization, Richard Hall Steckel, Roderick Floud), Byrne was more than two feet taller than his contemporaries, a dubious honor and stressful life for a man who only lived a short 22 years.  The notion of the stress he lived with is reinforced by anecdotal evidence of this man devouring himself in alcohol towards the end of his short life.  Byrne carved out a financial living for himself, with no regard to what effect it would have on his emotional life; so after he died he wanted to be buried at sea; a simple and very reasonable request that would be totally ignored by the people he most trusted.  Local surgeon John Hunter bribed a member of the funeral party to remove Byrne’s body so he may study it.  From the moment Byrne passed on, Byrne’s body, and now skeleton, have been treated as an enviable possession for people interested in the study of pituitary and growth disorders.  Now, 228 years later, the Royal College of Surgeons in London still refuses to let Mr. Byrne rest in peace after turning down yet another request for his watery burial, as recently as this past week.

Speaking as an Acromegaly patient and also as a patient advocate for people coping with Acromegaly, I am conflicted- because I would love to think that there is a cure to this disease hiding in Byrne’s bones, but after two centuries, I believe that this hope has likely faded.  Acromegaly, a disease that causes an overproduction of growth hormone can cause all sorts of life-altering symptoms including: changes in the face and body structure, severe arthritis, headaches, severe joint pain, and severe heart conditions, just to name a few symptoms.  If there were a chance to still discover a cure from studying Byrne’s DNA, it seems likely that science would already be on the right track, and if they are really that close, why not simply give a promise to bury the bones by ___ date?  As another option, it seems that they could simply extract a sample of remaining DNA for further study.  The overarching question is, does the college really need the bones to be studied in new and different ways that have done in two-and-a-quarter centuries, or is the college finding benefit in “letting” Charles Byrne continue to work as part of some involuntary ‘freak show?’

How is it that the man died so many years ago and his wishes are still being blatantly ignored- or does willful ignorance become easier as time passes, now that Byrne has no voice, and his family seems to have all passed on, are unaware, or disinterested in the welfare of their long-gone relation.

If you are looking for Acromegaly patients to fill Byrne’s stead, we have them all around the world begging to get medical attention, and they are alive.  There are many who can’t afford medical care, and would happily take your attention- as long as your respect comes right along with it.  Patients and their loved ones can answer your questions, and even give you responses, something you may find difficult in a man born while the Seven Years War was still being fought.  Now, there are a lot of wonderful doctors and research facilities working tirelessly on the cure and treatment for people enduring this terrible condition, and it is time to let Charles Byrne have his wishes granted.  He did not wish to spend eternity as an exhibit in a museum, being photographed and ogled by student doctors, interns, and tourists.  There are plenty of patients who donate their bodies to research and study after they pass- I would encourage you to study those patients and let Charles Byrne step down from the stage.

Death should be the ultimate escape.  From pain, from embarrassment, and from ridicule.  The offense here is merely heightened by the fact that it is a hospital and an institution of higher learning guilty of this gross offense against a man unable to protect himself.  After all, the Hippocratic Oath says to first do no harm.  It seems that this requirement should follow, even into a person’s death.

 

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

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.

 

 

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. 

Acromegaly Community is Reborn!

on Saturday, April 02, 2011. Posted in Blog

Welcome to our NEW Community!

Wayne Brown
AcromegalyCommunity.com

Well it finally happened.  We are finally making major strides forward into Acromegaly Community’s future.  This new website is designed to be easier to navigate with a much better message board. 

You can now favorite articles on facebook, and expand your own profiles.  Feel free to make this new website YOUR community, and share it with your friends, family, and medical professionals.

I hope that you like what you see.  If there is something that you feel we could be doing better or different, please let me know immediately so we can make sure we are addressing it.

If you have a blog or news piece you would like to share, please send it to us and we will be happy to share it with the entire Acromegaly Community! 

 

I hope you are well.

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