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Acromegaly - Patient's Perspective

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What is Acromegaly?

Acromegaly patients talk about how their hands have swelled:
"the changes have been imperceptible…looking at them now I can see they’re a lot puffier than they used to be. I used to have very long, thin, fingers"

"I had to go and have my wedding ring cut off"

"my hands have definitely gotten bigger and the joints sometimes ache"

Man (about his wife):
"each Christmas her Christmas present was to go and take all her rings down to the jewelers and have them made all another size larger"


Acromegaly patients talk about their change in appearance
"it just seems bigger, my face seems bigger"

"you feel as though someone’s put an air hose on and blown you up from the toe"

"my family noticed it…girls I worked with years ago didn’t recognize me. I felt such a freak"

"I didn’t notice my lower jaw had overgrown my upper jaw until someone pointed it out to me"


Acromegaly patients talk about snoring and sleep apnea
"I had a dream…there were three compartments, this one I was in (gestures to the left), the one in the middle had no air in it and the one on the other side (gestures to the right) was alright…I had to get through the middle…and I got into the middle one and I couldn’t find my way out"

"If I snore, nobody else can sleep!"

Woman (about her husband):
"you can’t hear anything for a few minutes…it goes very silent…and I think oh I wonder if he’s alive and I just push him and all of a sudden he starts up again! (laughs)"


Acromegaly patients talk about sweating
Woman (about her husband):
"he’s never sweated but now, he came in the other day and said “d’you know, I’m sweating now”

"Is it usual for me to sweat so much at night?…am I on my menopause?…we are talking as though someone’s thrown a bucket of water over me"

"the shirt would just be stuck to me as if I’d walked through a rain forest or something, and I would change my shirt"


Acromegaly patients talk about carpel tunnel syndrome
"(Holding up his hands) it got so bad, I used to go to work – being a carpenter – with a hammer, and I couldn’t use a hammer all the time…to read a paper, I couldn’t hold a paper up, I had to lay it on the table to read the paper"

"I’m getting woken up at night with pins and needles in my hands…it’s really bad…so bad that, you know, I’m asleep and it wakes me up"

"I found it was so bad that I’d wake up in the night and I’d find my hand had gone dead"


An Acromegaly patient talks about how she felt after successful treatment

"I felt absolutely wonderful, really wonderful and if you look at my frown you’ll see my frown’s almost gone, I’ve got just a line there like a normal person"