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.

Is breastfeeding safe?

Guys, I'm getting worried. I'll have my one-month postpartum check-up with my endo tomorrow. My OB-GYNE advised that I should nurse my baby. I have been doing so for a month now, but I've read some internet materials saying that breastfeeding might increase a pituitary tumor. My last MRI (post-surgery) was indicative of a 3mm residual tumor... I feel that I'd rather shift my baby to bottle feeding much as I want to continue nursing her, than take the risk of a tumor regrowth---that is SCARY!!!

Blog Away

Blogging...I think it's great therapy to get your thoughts out and it helps others, too! There is a new blog that has been posted by Miss Magpie who lives in Germany: http://miss-magpie.blogspot.com/. She recently had surgery and is sharing her story on Blogger. I would encourage y'all to check it out when you get the chance.

Also - anyone else who passes through this site, let us know if you've created a blog to share your story. There are many people looking for information on acromegaly, and most are wanting to read a personal experience from someone who has had surgery for a pituitary tumor. So, blog away (if you get the urge to) and tell others about you. Thanks to everyone who has shared their story with us!