Thursday, November 19, 2009

To say something or not?

I've always wondered if I should say something to strangers I see that exhibit signs of acromegaly. I have never actually said anything because I worry it might come across as rude, or it might be unnecessarily alarming, but this article is giving me second thoughts about holding my tongue:

http://www.guardian.co.uk/world/2009/oct/28/spanish-women-guardian-angel-disease

I'm curious, have any of you ever been approached by a stranger about your acromegaly, or have you ever approached a stranger (or friend or loved one, even) that you've suspected to have acromegaly? If so, how does one go about bringing it up?

4 comments:

almu said...

About this piece of news, I would like to add (since it happened in my country, Spain), that it appeared in many TV news programmes, but it simply spoke about the tumor, not a word about acromegaly.
I spoke to many people which confirmed me they saw it on TV but they never realized that she was an acromegaly patient: hearing about a tumor they all thought about cancer...
However, this news helped us a lot because we appeared on a newspaper (sorry it is in Spanish):
http://www.larazon.es/hemeroteca/adultos-demasiado-grandes
About diagnosing on the street, I have seen people that I am quite sure they suffer from acro, but I have never decided to tell them anything (just because of the same as Ellen says, and the fear to be wrong!) even though I would have so deeply thanked if anyone had told me before... I have a lot of acro-signs!
Maybe next time I will have the courage to tell anyone...

Mick said...

Very interesting topic. I've wondered the same thing myself. With the perspective of 20/20 hindsight, there are a couple of people I've known over the years that I'm certain had acro; huge hands, coarse skin, deep, deep voice, constant joint pain, etc. There are a couple of people I know now that I suspect might have it. With them I found a way to let them know the (my) symptoms without actually saying you might have it. If it rings a bell it rings a bell. But a stranger is different. If the symptoms were really obvious I believe I would find a way - maybe just jotting the word down on a scrap of paper for them and asking them to do a search when they have time.

polarchip said...

Hi Almu!

Wow! I read your article (translated into English)! That's so awesome that you were able to raise awareness about acromegaly so much!

I'll add your organization, www.tengoacromegalia.es, to the list of support groups!

Good job! Wonderful article.

-Ellen

Starbucks Addict said...

That's an amazing story. I've wondered if some people I've seen may have had Acromegaly. But no, never approached them for fear of being wrong.