Acromegaly Support Group

Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.

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flouncy 04/17/2008

Thought it would be interstting to list a few celebs that have acromegaly. just to show us that we can go far in life with acromegaly. ive listed a few but if you know more add them.

Kevyn Aucoin was a make-up artist and photographer for the celebs.
andre(the giant)Ren Roussimoff was wwf wrestler. was 7ft
Richard Kiel height star of bond movies (known as jaws) was 7 ft2
ted cassidy played lurch in the adams family films.
Paul Wight (another wrestler)
Rondo Hatton (an actor whose face was disfigured by the disease, and who often played criminals and thugs).
tony robbins a motivation guru

deleted_user 04/20/2008

I can think of one Sing Sing Ming who is now Yao MIng a famous basketball player who plays for the Houston Rockets.He is out right now with a fracture.

flouncy 04/21/2008

ouch, bet that hurt. great sport to play being so tall!!

PapillonRoseBleue 04/21/2008

I looked at the wikipedia entry for acromegaly and they have a long list of acromegalics who are or were famous. As far as I can tell, they were all male.... A large number of them were tall, too. Not be. Not male and not tall...... Why do you think there are no famous female acromegalics?

swampy 04/22/2008

theres a woman in china shes the worlds tallest at 238cm she has acromegaly her name is yao tefen

flouncy 04/22/2008

i also havent found anywomen celebs with acromegaly. i wonder why???

flouncy 04/22/2008

ok now i have....
Sandy Allen from Shelbyville, IN (USA) who stood at 7'7 1/4" (232cm) at her tallest

7'0 1/4" (214cm)Esther Fosuaah, Brong-Ahafo (Ghana)

apparently famous for being so tall.

deleted_user 04/23/2008

This is not exactly the same subject but have you noticed that Sly Stalone take GH and his face looks all puffy and like he has it! I guess the GH is supposed to prevent aging and help with muscle tone when you get older, he is pretty old now... but he looks like crap!!!!!

flouncy 04/23/2008

yeah, i noticed. he took a lot of it to do the last Rocky film to build muscle up quick. big mistake. he did get a telling off for that.

spiegal 04/23/2008

I read an article about aboutpeople taking GH, and it actually stated that Acromegaly can occurr, I wonder if he knew that? silly man

deleted_user 04/23/2008

flouncy mentioned Andre the Giant,I met him in 1971,he was the Tag team partner of a wrestling friend of mine,I was 6foot 7inches and weighed 18 stone at the time but felt tiny alongside Andre who claimed to be 7foot 3inches and 30 stone.Another Acro-Giant I met was Mohammad Channa from Pakistan,he was with the Pakistan provilion at World Expo 88 in Bribane,he claimed to be the worlds second tallest man at 7foot 7inches.Neither of these gentlemen spoke English so we were only able to exchange smiles handshakes and friendly gestures,and unfortunatly both gentlemen have since died from the complications of not having had their Acromegaly treated.I however intend to live until I am well over 100!

flouncy 04/24/2008

wow thats brilliant pete!! my other half will be so jealous of you meeting a wrestler!! he tries to watch as much as he can he loves it.when i found out i had acro he told me staright away that there was andre the giant from wrestling that had it.

PapillonRoseBleue 04/24/2008

Pete you have a special gift for being inspirational and Flouncy you came up with an interesting topic and Swampy you made me learn a great deal yesterday. Whenever I feel a pity party coming on I'll go back and rewatch a video about Yao Defen and the absolute hell she's been through. I'm belly-aching about waiting months for my surgery. She had to wait more than 13 years for her first one! Sandy Allen is almost a neighbor - in a neighboring state anyway & I learned that the tallest officially recorded man died in Michigan at the tender age of 22. There is a song about him and one about Sandy Allen, too.

Gargoyle47 08/19/2016

Hi. I'miss not famous, but I do have Acromegaly. I'miss a 47 year old male. In '98 I had tumor surgery removing 97% of the tumor (3% had grown inside my pituitary gland and couldn't be removed without killing me), I was 29 at the time of surgery. I'm 47 now. In 2013 I was informed that I had finally stopped over producing human growth hormone, but I still over produce adrenaline. I now slightly under produce testosterone. In the end, I look like I weigh 220lbs. but I really weigh in at 289lbs. because of an incredibly extra dense bone structure from head to toe with really big hands and size 16 EEE boot size, yet I only stand 5 feet 9 inches tall. I go by the nick name Gargoyle because it feels like to other people that my bones are made of granite like stone because of my Acromegaly.

Question: are there any people with Acromegaly who have undergone male to female transgender hormone replacement therapy? If not, then I may be the first. I started male to female transgender hormone replacement a month ago.
I'very never have found a support group for my condition (my family that adopted me when I was 7 months old hasn't been the greatest support either) and had to deal with this disease while being homeless off and on with no support except from a few friends, and that was all moral support.
It's been very tough.
Just thought I should share my experience with this disease, thus far.

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