I am forty-three years old and have had CREST Syndrome for the past thirteen years. I have two little girls and a wonderful husband who has helped me through this.
I have spasms in my back, throat, and legs. I find it very difficult to eat, and difficult to do all the simple things like riding a bike or even walking, and when I try to do these things, I am in horrible pain for days.
I find it hard to help people understand what it is we are going through because they can only see the outside, which looks good, but it's the inside that is really falling apart. I am tired of always having to say, "I'm sorry, I can't," or "I'm sorry, I just do not feel well."
I would like to be able to talk with anyone who is going through the same thing that I am and find out how you handle this. Who knows, maybe we can be uplifting to one another as we journey through life with the horrible thing called scleroderma.
New email address needed 08-06-09 SLE
Old Email Prefix: Tinkerbelle2323
Posted 6-16-99 SLE
Story Artist: Shelley Ensz
What is Scleroderma?
Types of Scleroderma
PDF Brochure: What is Scleroderma?
United Way of Central New Mexico
United Way of Snohomish County
See ISN News for recent donors, including Juliet Youkhana; and donations in loving memory of Jim Miller and Arlene Marie Petulla.
Click Here to Donate or Shop
or click on the floating green DONATE sclero.org button.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: