Raising Awareness

Hello! I hope you all had a Merry Christmas, are still enjoying your Happy Hanukkah, and are looking forward to a Happy New Year!

I have been visiting my parents in the Midwest, where we just hang out, eat too much food, and watch a ton of TV. So far we are gravitating towards medical dramas (House M.D. and Scrubs) and reality TV (Discovery Health). We've been watching all these shows where there are mysterious diseases and it reminds me so much of before I was diagnosed (and being misdiagnosed). Idea! We should write to all these TV shows and tell them about Acromegaly. Wouldn't acromegaly make a good episode of a medical mystery? There are so many potential wrong turns, misleading symptoms, etc, etc. I can see how doctors could easily rule it out because someone didn't immediately show the classic symptoms (hands, feet, face) which take a few years to develop. Having acromegaly discussed on TV will raise awareness of he disease, and hopefully help people get an earlier diagnosis. Early diagnosis is so important!

There are a couple of shows on Discovery Health about gigantism, which is close to acromegaly, but not as obvious. Is there a way to petition a network about what kinds of shows should be aired?

Goals for 2009

I haven't had the chance to update this blog as much as I would like, and I'm already thinking of New Year's resolutions for this blog! If you haven't been added as an author yet, please email me and I can add you easily.

Here are the improvements I would like to see in the upcoming year:

• More posts: at least 2 a month. Not just from me, but from anyone!
• Design makeover: fancier looking banner, more interesting color scheme.
• More multimedia: Embed acromegaly related videos, pictures, and audio.
• Make some kind of profile page for each contributor to this blog so that people can see a timeline, what kind of treatment each contributor has had, and any other personal info they feel like sharing.
• Some kind of outreach program to raise awareness of acromegaly and therefore help people get earlier diagnosis (and more successful treatment). There are so many other professionals besides endocrinologists that can be on the lookout for symptoms: ophthalmologists, optometrists, dermatologists, dentists, orthodontists, podiatrists, hand doctors, jewelers (adjusting ring sizes), make up artists, etc etc. Can you think of more? Of course the general public should know about acromegaly too. When I think about how long I had symptoms and how long I went undiagnosed and I really want to make so no one else has to go through the same frustration.
• In-person meet up somewhere?
• Get acromegaly to show up in spell check! So frustrating that most software doesn't recognize it as a word!!
  

Please leave your own ideas in the comments!

Updates!

Hello Dearest Acromegaly Friends!

Thank you for your comments on the last post- I have updated the url for Miss Magpie and I would like to introduce the newest member of the community:

Trys!

I hope that everyone is doing well. I am sad that I missed announcing Cedars Sinai's Pituitary Patient day last month in Los Angeles- did anyone happen to go? I'm curious what they talked about and what kind of acromegaly turnout they had. They told me that there is a new acromegaly study starting soon and they need subjects- I don't have all the details yet but I will try to be better about sharing the info I get.

Welcome, Omar!

New acromegaly blogger on the radar!

http://odelrio.blogspot.com/

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!

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!

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:

http://news.yahoo.com/s/ap/20080813/ap_on_re_us/obit_tallest_woman

http://www.dlisted.com/node/27725

http://www.indystar.com/apps/pbcs.dll/article?AID=/20080813/NEWS/80813001

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.

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: http://pituitary.mgh.harvard.edu/APED2008.htm

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.