Wednesday, October 28, 2009

Acromegaly, Aging, and Loss

I was reading one of my favorite advice columns the other day, "Since you asked," when I found a letter that struck a resonant chord with me. The letter was written by someone who is concerned about turning 50, facing a rare disease, and basically realizing that he's not 20 anymore. I'm not that close to being 50 years old, but reading the letter reminded me of dealing with acromegaly because for me it has represented the loss of a more carefree and energetic time.

I'm never sure if I'm feeling a certain way (tired, achy joints) just because of the natural aging process, or if it's a symptom of acromegaly. I think about the misinformed people who abuse human growth hormone hoping it will act as a fountain of youth and I shake my head because for me I feel like it has only aged me.

I don't want to give away the whole article, but the advice columnist wrote, "You also sound like you are grieving for your youth," which really struck home. When I get sad about acromegaly, I am grieving for the life I had before acromegaly.

Anyway, I don't always feel like this, but it certainly captured the essence of what I think about when I'm feeling down. I loved the columnist's advice, but I was wondering if you, my fellow acromegaly compadres, had any advice of your own for facing similar times. Please let me know what you think!

Wednesday, October 14, 2009

"There is a clear need for better treatments for this niche and difficult to treat disease"

Here's a little ray of hope for those of us who are interested in new treatments becoming available - there's a new drug being developed called ATL1103 that just passed some level of development, and will probably start a human clinical trial in 2010. Sounds promising!
ATL1103 is a second-generation antisense drug that targets the growth hormone receptor (GHR). By blocking the action of GHR, ATL1103 inhibits production of insulin-like growth factor -1 (IGF-I) from the liver thereby reducing its levels in the blood. GHR is a clinically validated therapeutic target in the growth disorder acromegaly (excessive growth of parts of the body and organs including the liver, kidney and heart) where the goal of treatment is to normalise IGF-1 levels in the blood. There is a clear need for better treatments for this niche and difficult to treat disease with the size of this market nearing US$1Billion per annum in drug sales.
-From some press release, via the RSS news feed "Acromegaly News" in the sidebar

Friday, October 2, 2009

Getting There—to the End of My Journey—This Time Around

Please see my new post on my recent transphenoidal surgery to remove a residual pituitary tumor. I initially posted it here but thought it wiser to just share this link: Thanks. There is a cure for acromegaly as excision of the adenoma can result in remission for some of us. God bless us all.