It all started when I was twenty-one years old and I developed Raynaud's phenomenon. This condition became progressively worse and I now wake up in pain every day due to ulcers on my fingers and knuckles.
A couple of years ago, I was referred by my general practitioner (GP) to a rheumatologist who took tests and diagnosed me with CREST but failed to inform of this. When I rang the hospital they advised me that if I hadn't heard anything about the test results than everything should be fine. However, after a visit to my GP about another issue, she looked up my records and informed me of the diagnosis. I saw the rheumatologist last week, who has booked me in for a heart scan and other investigations.
I am feeling very low at the moment as after seven years of dealing with all the changes, and trying to carry on as normal, I feel like I have lost. I rarely go out. I find it difficult to carry out daily tasks and my face looks weird.
I am twenty-eight years old but I feel drained all the time.
My husband says he will support me but I feel like he gets annoyed and frustrated by my condition as he can't do anything to help me. I have two kids and that's all that keeps me going.
I don't think I am coping very well.
Email: [email protected]
Story edited 12/04/08 JTD
Story posted 01/15/09 SLE
Story Artist: Ione Bridgman
Story Editor: Judith Thompson Devlin
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
ISN Artist Ione Bridgman created original artwork to illustrate this page. She is 90 years old, and lives in New Zealand. Her lovely paintings illustrate many of our pages and the covers of our Voices of Scleroderma Book Series .
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: