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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.

Clothes Rack by Shelley EnszHi, 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.

To Contact the Author
Alina
Email: af3665@yahoo.com
Story edited 08-12-08 JTD
Story posted 10-06-08 sle

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
LINKS
Alternative Therapies
Anxiety
Anxiety Stories
CREST Syndrome
CREST Stories
Telangiectasia
Telangiectasia Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Symptoms of Scleroderma
Types of Scleroderma
What is Scleroderma?
ISN Story Editor: Judith Thompson Devlin
Judith Rose ThompsonJudith 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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(Español/Spanish) Alana: Paciente Nuevo con Esclerodermia (Peru) Le dije que ya no podía abrir la boca completamente, he perdido la fuerza de las manos, tengo problemas respiratorios, mi rosto está diferente, mi piel está dura y he perdido casi el apetito...
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Sharon H: Scleroderma/Morphea It has been thirty-two years living with this and it has progressively gotten much worse and has spread...
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More New Stories: November 2008
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