Saturday, August 30, 2008

Welcome, Omar!

New acromegaly blogger on the radar!

He just had his surgery and so far it seems like his recovery is going great! Looking forward to reading more from Omar!

Any other acromegaly bloggers out there make sure to leave a comment with a link to your blog!

Wednesday, August 27, 2008

Pink Elephant in the Corner

OK, I really, really don't want to come across as a hater, or rain on anyone's parade, but I've been thinking about this lately because of the large amount of news coverage.

Doesn't Michael Phelps look like he has acromegaly? I mean, people talk about how he's tall and he has big flipper-like feet all the time. His jaw looks a little enlarged too, and his teeth look like mine- too narrow on the top.

I know I'm not the only one who thinks so, because I did a search and there are a couple of other people who made comments about it.

Let me make it clear, I'm really not trying to tarnish his reputation or anything. Acromegaly or not he's a hot piece, but IF he does indeed have acromegaly he could be a really great spokesperson for the disease! He could really raise awareness of our rare condition, which would hopefully help others get an earlier diagnosis (and therefore more effective treatment), and also spur more acromegaly research.

Maybe we can start an acromegaly swim team!

Wednesday, August 13, 2008

Sandy Allen, RIP

Sandy Allen, acromegaly (and gigantism) patient, died today. I've seen her on a few TV documentaries and I always admired her upbeat attitude. She lived her life with the utmost grace, and she is a personal inspiration for living a full and exciting life despite her diagnosis.

Some links:

slideshow from indystar

Wikipedia Entry

I know the extreme nature of her condition might alarm those who have been recently diagnosed, but remember that she is the World's Tallest Woman and therefore on the far end of the acromegaly spectrum. I want to recognize her because she was such an advocate for "being different" and we all have the opportunity to have the same influence in our own ways.

Sunday, August 3, 2008

Acromegaly Patient Education Day

The Neuroendocrine Clinical Center at Massachusetts General Hospital presents:

Acromegaly Patient Education Day
(Program was held Friday, May 30, 2008 at MGH)

"The Neuroendocrine Unit at Massachusetts General Hospital is pleased to offer an opportunity for patients as well as their families to learn more about acromegaly and advances in surgery, radiation, and medical therapy. Speakers will include specialists in acromegaly and other patients diagnosed with acromegaly."

Here is the link:

There are some informative videos posted on this site (from the conference) that you can watch - including patient stories. This is a great resource for anyone looking for more information on diagnosis and treatment of acromegaly.