Hi, my name is Alina and I am forty-one years old. I was diagnosed with Scleroderma CREST syndrome sometime in 2002. I did not know I had this condition until my general physician did a blood test and saw some abnormality in the blood cells. He then referred me to a rheumatologist where some tests were done.
So far, my organs are in good shape but I do have the localized CREST syndrome phenomena according to the doctor. I am presently taking two different types of medication to control my cold flares that I go through daily, especially in very cold temperatures with air conditioning. It's not easy to work and have the temperature at a comfortable level. I cannot live a normal life due to this condition.
I have very bad telangiectasia on my face, chest, neck, arms and hands. I also have a brown patch on my back. I am thinking about having laser done on my face and probably chest area. I am hoping that once I do this the spots won't come back.
I am also concerned because it's very hard to find a good rheumatologist in Florida where I currently reside who understands and is sympathetic to my condition. As a matter of fact I had two bad experiences with my rheumatologists. I will start my search again and there are not many to choose from through my insurance which is a shame.
I have been educating myself by reading articles about this condition and people who have it. One good resource for information is the internet. This site is very helpful as I have been reading articles of people with my condition and can relate to what they are going through. I also have other conditions like anxiety attacks, skin allergies (itching, hives) that I don't know if it's related to my condition. I am taking additional medications for the anxiety and skin allergies which is not helping me much.
I am tired of taking so much medication. I would prefer taking natural products which would be helpful for my health. I have heard that stress level should be kept at a minimal to avoid flares but it's more easy said than done especially when we all have to work for a living and deal with different kinds of people and personalities. So far I have been the only one in my family diagnosed with this condition.
My wish is that one day they find a cure for this condition that affects mostly women. Thank you for hearing my story.
Email: [email protected]
Story edited 08-12-08 JTD
Story posted 10-06-08 SLE
Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
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: