Day 23 #WEGOhealth #hawmc

Say what?! What’s the most ridiculous thing you’ve heard about your health or condition? Was there any context?….

So, I’ve never heard or been asked anything absurd. Can I fault someone for not knowing where the pituitary is or not being able to pronounce acromegaly? No, of course not. I do fault professionals and so called advocates for using materials with gross misrepresentation of the appareance of people with acromegaly. There may be a set of common symptoms and features but if we all looked as though we had gigantism…I’m guessing diagnosis wouldn’t take nearly the average of five or more years.

We don’t all look the same! When you look up acromegaly you see a giant… broad forehead, spreadingĀ nose, wide lips and very masculine. You don’t know how your appearance may change. No one’s going to spot me on the street and say “oh my gosh there’s a giant” because I’m not. What are we called… acromegalyacis, how ’bout acromegalites. Thing is, we’re all so different because hormones effected are random. It manifests in so many ways. What helps the disease for one person, doesn’t help the next or isn’t even an issue for another…We don’t all look or feel the same.

Several years ago there was a young woman with the most severe, aggressive, untreatable form of acromegaly which really turned into gigantism. Although my heart breaks for her family, she has since passed away, her story is so extreme that it does not fit 99% of us. Yet she was the one chosen to be on talk shows. I don’t want her to be the face of Acromegaly because that is the far extreme and most of us do not look or have that kind of growth. It’s not about the extreme in looks. It’s about the damage to the body. If people think that you have to look like a giant in order be truly sick then all the rest of us get swept under the carpet. They should have invited her to talk shows along with a few others to show out diversity. It felt like old-school freak show mentality. The media and doctors are to blame.

There are times that my features are more acromegaly looking…. more swollen, protruding….but in general people think I must be better or I was always basically “fine.” I’ve been asked how could I still be sick, I’ve had surgery? How could radiation take an average of 10 yrs to know if it worked?! I don’t know….

It’s bad enough that most people have never heard of acromegaly but, it is truly insult to injury, when the photo you find in a book or more likely online, is typically Lurch from the Adams Family.

 

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