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, they think this could never happen to them, and they ignore it. I can’t remember what I knew or felt about acromegaly before I was diagnosed. But the possibility of having what Andre The Giant had was so far from a possibility, 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 significantly 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!



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