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

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

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.



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