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Mastocytosis and photosensitivity

  I have been inconclusively diagnosed with Systemic Mastocytosis.
  Symptoms are vomiting, diarrhea, flushing, some skin involvement,
  anaphylaxis shock reactions.  Exposure to the sun for even a few minutes will bring on these and other systemic reactions.  I need to obtain information on systemic reactions for photosensitivity.  Symptoms have graduated to severe in nature.
  I have had complete GI diagnostic workups with sigmoidoscopy, biopsies, etc.  All were negative.  I am on meds to control or lessen the symptoms, which do not work effectively, and carry an Epi-pen.  I am not symptom free, but greatly improved, when free of sunlight and fluorescents.  I AM DESPERATE FOR INFORMATION AND/OR A RESOURCE FOR SUCH INFORMATION.
Dear Chelle,
The medical literature is, unfortunately, limited in the articles relating to the treatment of systemic mastocytosis.  Many of the publications are anecdotal case reports from whcih it is difficult to draw conclusions.  The randomized control studies are small, reflecting the infrequecny of the condition.
Treatments with PUVA, antihistamines ( including H1 and H2 receptor antagonists), drugs to stabilize the mast cells (cvromolyn) and corticosteroids have been reported as successful therapies.
The specific treatment for your condition requires that you meet with an experienced dermtologist.  You may wish to ask your physician about referral to The National Institutes of Health in Bethesda or to a universoty with experience treating mast cell diseases.
This information is presented for educational purposes only.  Ask specific questions to your personal physician.
*keywords: mastocytosis

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