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Alina: Scleroderma CREST Syndrome

So far, my organs are in good shape but I do have the localized CREST syndrome phenomena according to the doctor.

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.

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ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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