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Solar Angioedema, anyone?

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Old Bones, May 1, 2017.

  1. Old Bones

    Old Bones Senior Member

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    Does anyone else out there, especially those with mast cell issues, experience angioedema after minimal exposure to sunlight? For those not familiar with the term (I wasn't until a couple of weeks ago), angioedema is:

    "an acute or chronic disorder that affects the mucous membranes and deepest layers of the skin along with underlying tissue and that is marked by rapid swelling, large welts, and pain.

    NOTE: Swelling results from a buildup of fluid leaking out of blood vessels with walls that have become abnormally permeable. The lips, mouth, throat, eyes, hands, and feet are most commonly affected. Swelling of the throat may interfere with breathing and can be life-threatening."


    From a very young age, I've experienced unusual reactions to sunlight. But it's getting worse, and this spring is the worst ever. After every occasion I've spent outside (usually no more than half an hour, sitting; covered in clothing except hands and face, including a hat and sunscreen; and often in mainly overcast conditions); I've come inside to find my face swollen, eyelids almost swollen shut, as well as swollen and burning/stinging hands and feet. Fortunately, the facial swelling goes down quickly once inside, but not the swelling in my hands and feet. I'm definitely not as bad as the frightening photos online depict, but it seems I'm going in that direction.

    So far, my "Googling" hasn't uncovered a treatment that would be available to me, or that has much chance of success. The main recommendation is to modify one's life to completely avoid the sun -- essentially live indoors full-time (pretty much my situation most of the year anyways). Which is why I especially appreciate getting outside once spring arrives.

    Any suggestions -- pharmaceutical, or supplement?

    Here's a link to an article about Solar Angioedema:

    http://allergynotes.blogspot.ca/2010/07/solar-angioedema-local-angioedema.html
     
    merylg likes this.

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