Stigma: “a mental or physical mark that is characteristic of a defect or disease”

An Opinion and commentary from JD Faccinetti, Chairman, and co-founder.  I’ve always been interested in stigma, particularly the stigma associated with pituitary disease, and most notably with acromegaly. Watching the recent HBO special documentary about Andre the Giant was no less thought-provoking, especially how the producers treated his gigantism and acromegaly.

Andre Roussimoff – better known as “Andre the Giant” was a French professional wrestler who suffered from gigantism and later acromegaly, as you all know, a condition characterized by the overproduction of growth hormone.  He was once called the 8thwonder of the world.

This was an intense, disturbing documentary about the crazy, perhaps unsavory world of professional wrestling and the unfortunate, desperate life of a person with an “extreme,” let me say that again, “extreme” case of gigantism and acromegaly who didn’t get or, according to the producers, refused treatment.

Throughout the film, I could feel his sorrow, which brought me to tears more than once.  It made me angry and sad, so much so that I flipped to another channel and walked away several times. I eventually resorted to the “On Demand” feature to watch it in its entirety. “If I’m going to have an opinion about this, I need to sit through it,” I said to myself.

The takeaway after watching the film came to me immediately:

“Andre the Giant is the last thing I want people to think about when they think about or hear the word acromegaly.”

“Here I was watching someone with a debilitating disease that I know all too well and have, unfortunately, first-hand experience with, and all I could see was a sad, tortured freak of nature, far, very far from the reality of the thousands of people that deal with the disease.  It was unfortunate, in my opinion, that acromegaly was even mentioned in the documentary, albeit late in the program, which concluded with a mention about the inevitability of his fate when he died at age 46 of a heart attack.”

For those of us who are in the business of increasing awareness, educating and informing people about pituitary disease, this is definitely a step in the wrong direction. Without a doubt, it furthers the stigma of the illness.  No question!

Let me try to explain what I mean.  When all people see are extreme cases, it makes them think this could never happen to them and they ignore it.  Personally, I can’t remember what I felt about acromegaly before I was diagnosed other than the connection to Andre or Jaws, the James Bond villain.   It was so far from the possibility of ever happening to me, or so I thought, the disease didn’t register even for a nanosecond.

Actually, most people with acromegaly look very much like everyone else.  In fact, most people, early in their disease process, don’t have the unusual physical characteristics so often photographed in the medical and popular literature.  Perhaps, if we paid less attention to the physical issues and more to other signs of the disease, we’d be catching it earlier before it starts wracking havoc with people’s physiques and metabolism. Typically, once physical changes manifest themselves the disease has taken a firm hold in a person.  And, if all we are looking for are the physical manifestations of the disease, we will never achieve meaningful change to signficantly reduce the time it takes to recognize it and diagnose it.

So, for those of you who think this documentary will help, in any way, the cause of increasing awareness of the reality of the disease and the people it affects, think again!

 

 

Copyright © Pituitary World News – 2018 – All rights reserved

Photo by Craig Ren on Unsplash

 

© 2018, Pituitary World News. All rights reserved.

2 COMMENTS

  1. JD:

    Thanks for your thoughtful and thought-provoking commentary on the documentary. I would like to think there is benefit to any “publicity” of acromegaly, even if it is “bad” publicity. Think of all the diseases, some rare, others no so rare, where celebrities raised public awareness–Lou Gehrig’s Disease (ALS), Michael J. Fox (Parkinson’s), etc. How many rare diseases go undetected due to lack of public awareness because there are no examples in pop culture?

    For better or worse, acromegaly has no shortage of pop culture examples. Unfortunately, as you point out so effectively, most of the pop culture examples of acromegaly are extreme versions of the condition. Many people with acromegaly are not giants and bear little resemblance to Andre.

    In my case, before being diagnosed with acromegaly, I was aware of gigantism, but I assumed it was a condition that people, such as Andre, were born with. It is perhaps from the pop culture examples of gigantism and acromegaly, that I had no idea that it was a condition that people can develop later in life. However, I wonder whether I would know that a condition such as gigantism exists, if not for watching Andre the Giant and hearing stories of The Alton Giant and others of giant stature. I seem to recall the concept being taught in my high school biology class, but I am almost certain that my retention of that knowledge is largely due to making the connection to pop culture examples of the condition.

    Perhaps the boost in awareness resulting from pop culture examples of other diseases, does not benefit of acromegaly awareness, and worst case, is detrimental to acromegaly awareness. The pop culture examples of acromegaly represent the disease as a “you know it when you see it” type of disease. While there are certainly distinct physical manifestations of gigantism and acromegaly, the extreme examples in pop culture do little to raise awareness of the physical manifestations of most with acromegaly, and even less for the non-physical manifestations (i.e., inside the body).

    There is opportunity to diagnose those with physical manifestations earlier; however, as you noted in your post, the greatest opportunity is raising awareness of the non-physical manifestations (which begin to occur prior to the physical manifestations) to diagnose acromegaly even earlier.

    Is there an opportunity to (stand on the shoulders of giants) and use the pop culture examples of acromegaly to positively raise awareness of the physical AND non-physical manifestations of acromegaly? I picture an advertising campaign (web, print, etc.) with a picture of Andre (raising his hand, if such picture exists) with a caption that states “I have acromegaly” next to a picture of a much smaller person with acromegaly (raising his/her hand) that states “I have acromegaly.” The goal would be to get physicians (and the general public) to look beyond the pop culture examples of the physical manifestations of the disease, and to learn that there are many non-physical manifestations as well.

    Keep up the great work!

LEAVE A REPLY

Please enter your comment!
Please enter your name here