really good video here

Found this on the net. Really good info on the disease.
http://www.healthline.com/hlvideo/acromegaly-the-growth-disease

VA support

I thought I would share some information for military people who may have acromegaly. I had brain surgery in November using the endoscopic method. Everything came out fine and the VA paid for everything and did a great job with all the supporting tests before surgery. After surgery, great too as I am now on lanreotide (somatuline depot injections). Medically speaking everything is great and the system works just fine. On the other side of the fence however, my VA claim is encountering vast opposition so please ensure that when you're in you report every thing, even things you may think are meaningless at the time, and have them documented. Because once you're out they will attempt to do everything in their power to avoid fulfilling the contract this nation made with you when you joined. Sad, but true.

Endo Buys Indevus

Here's another bit of news from the news feed:

(A drug manufacturer that produces an acromegaly medication has been purchased by another.)

Endo's acquisition of Indevus has shifted the firm's attention to other specialty markets, such as neurology, endocrinology, and oncology ... Endo is also pursuing the development of ... its octreotide implant, which treats a rare hormonal disorder known as acromegaly.

I think my endocrinologist mentioned something like this at my last appointment! Instead of having to go in every 4 weeks for Sandotatin or Somatuline, it would be active for 6 months. He thought the project was being shelved, but if this article is accurate, then it sounds like they will continue working on developing it! Having to go in for medication only 2x a year sounds great, as right now every 4 weeks can be a bit of a hassle.

via http://www.morningstar.ca/globalhome/industry/news.asp?articleid=286008

Clinical Trials!

Hello Dearest Acromegaly Friends,

Have any of you considered/participated in a clinical trial? I was surprised to see how many trials for acromegaly were listed!

Check it out for yourself at:

http://clinicaltrials.gov/ct2/results?term=acromegaly

The Kanzius Method?

Hi Folks!

How many of you read the Acromegaly News over in the sidebar?  I take a look at it from time to time, and I found one of the current articles up there to be particularly exciting - It talks about the the Kanzius Method of treating pediatric brain cancer, which may be one day applied to pituitary tumors!  Very interesting idea, and I hope there is funding and support for more research!  Here's the article in the news bar:

http://www.news-press.com/article/20090319/OPINION/903190319/1015

It seems the person who invented this method passed away recently (John Kanzius, R. I. P.) but his legacy is quite profund.  I read his obituary and discovered that he is quite a remarkable person- he seems quite brilliant and accomplished despite never earning a college degree.  I encourage you to take a look at his obituary for yourself!

Anyway, the message of this post is to remind people that there is progress in the treatment of acromegaly!

Where are all the support groups?

I was checking out one of the support forums, AcromegalySupport.com that we have a link to (on the right sidebar) and it seems like most of the activity on that site happened back in 2007. The most recent post, from Jan 28, 2009 reads:

Anybody still check here? I sure do miss this forum... Best of the lot, in it's day. I'd love to resurrect its primacy and valuable resource of friends and contributors.

-Jeff

I tried to post a response (and point people to this blog!) but my account request was never approved. I even emailed the administrator but I never got a response. If any of you are registered members over there, please let people know about this blog and also tell the admin to allow new members!

I tried looking at MSN Acromegaly Groups as well, but the page reads "The MSN Groups service will close in February 2009," so there goes another online support group.

The MySpace Acromegaly Support Group seems to be doing ok, with a new topic every couple of months or so. I found more activity on Facebook, with an Acromegaly Support, a Pitutary Tumor Awareness, and a Acromegaly Awareness group! I haven't had a chance to go through all the discussion boards, but there are over 100 members in their Acromegaly Support Group! Pretty impressive.

Does anyone else have recommendations for more online support groups? Please let me know about them in the comments and I will update our sidebar to include all the new findings.

Of course, my fellow Acromegaly Bloggers will always have a special place in my heart. You have been the best support for me. I really love how following people's blogs has allowed me to get to know people as individuals. I also like how in people's blogs, acromegaly has context, like I can see how it fits into the bigger picture of living life (family, moving, graduating, career, etc). Remembering that life goes on despite having acromegaly has helped me to stay positive. Thanks to all my fellow Acromegaly Bloggers!

Hello Paul!

We have another acromegaly blogger on the radar! Paul just had his surgery less than a week ago, and he just started a new blog:

http://acromegalywithmrpaul.blogspot.com/

Welcome, Paul! We're looking forward to getting to know you!