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Crest syndrome

bobbinbobbin Member Posts: 2 Listener
edited October 2018 in Disabled people
Does anyone have this or know anything about it. Thanks


  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    Hi @bobbin

    The rare diseases website says:

    "CREST syndrome, also known as limited scleroderma, is a widespread connective tissue disease characterized by changes in the skin, blood vessels, skeletal muscles, and internal organs. 

    CREST is an acronym
    (C) - Calcinosis: calcium deposits in the connective tissues
    (R) - Raynaud's phenomenon: where the hands and feet turn white and cold and then blue, in response to cold or anxiety
    (E) - Esophageal dysfunction resulting in swallowing difficulty
    (S) - Sclerodactyly: thick and tight skin on the fingers, caused by an excess of collagen deposits within skin layers. 
    (T) - Telangiectasia: small red spots on the hands and face that are caused by the swelling of tiny blood vessels. 

    CREST syndrome is believed to be an autoimmune disorder, where the immune system appears to stimulate the production of too much collagen which builds up in the skin and internal organs, impairing their function. There is no cure. Current treatment focuses on relieving signs and symptoms and preventing complications."

    I dont think any other members have mentioned CREST before though.  Is this something you have? Can you tell us a bit more?
    Senior online community officer
  • bobbinbobbin Member Posts: 2 Listener
    Gp thinks I may have it so seeing rheumatology on 22 Nov  I've had problems with fingers for eight years now it's on toes.  I get white lumps which get infected if not dressed each day. I have had to be hospitalised to have wash outs and intravenous antibiotics. 
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