Tuesday, September 23, 2008

enough about my disease, tell me about yours?

For those who don't know, I am not the only one in my family living with disease.  My senior year of high school, my father was diagnosed with scleroderma.  He was given medication, chemo, and limited other sources with little success.  The disease is so new - and so rare - that no doctor seems to really know what to do with it right now.  At least, that's been the case for the last couple years.  Everything that happened was "expected," and anything that wasn't happening yet wasn't something that we could expect or not expect.

As the disease progressed and we were told there was nothing much else to do, my parents took matters into their own hands and did all the research they could.  Then, my dad found Jane, a woman who had reached about the same critical level of his illness and opted for an experimental stem cell transplant.  The process was long and involved, but my parents eventually relocated to Waterville, ME for the duration of the procedure (approximately 2 months).

Since the procedure - almost 2 years ago - my dad's condition has been up and down (currently up, but with irreparable damage).  The transplant is exremely experimental, so results may (and absolutely do) vary.  However, more and more people are being diagnosed with Scleroderma, and more and more are resorting to stem cell transplants.
Below is an article my mom sent me this morning.  The news "just keeps better and better."

[Click the article to read on at cbsnews.com.]

For more information on Scleroderma and getting involved, visit The Scleroderma Foundation.
For information on helping raise money for experimental-transplant patients,

1 comment:

Anonymous said...

Wow! What are the odds. It's so new that we know next to nothing, but my mother was recently diagnosed with Scleroderma. I am in recovery from anorexia/bulimia (12 years sick, 11 years healthy).

Weird. Wonder if there's a government grant for such coincidences? :-)