Hi All,

I have recently been diagnosed with diffuse systemic scleroderma.  It's a pretty rare disease affecting around 300K in the US at any given time.  There is no known cure for this progressive auto immune disease which causes hardening of the skin and also can harden the internal organs such as heart, kidney and lungs.  My cells seem to overproduce collagen.  If there's a silver lining, I have no facial wrinkles and I  also have a perpetual tan.  My body internally manufactures my own botox and restalyne treatments – not many people can say that; plus it’s a good cost cutter: likewise, I have no need for a tanning booth!

Thankfully, I've been very proactive and am seeing a top notch specialist at Northwestern Hospital in Chicago. I have been very healthy my entire life so having a pharmaceutical supply in my house is very different!  I'm now the lady with the pill box (and not the Jackie O hat type).  I’m on a new drug that will hopefully stop the thickening, tightness and itching of the skin as well as help my lungs.  It only works on some patients and they never know who it will work on.  So you can see that a lot needs to be learned about scleroderma. Through research, hopefully people won’t have to go through some of the things I’ve been experiencing. Any type of donation to further research for this debilitating disease would be greatly appreciated.