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Daries Disease aka keratosis folliculosis, mastocytosis, urticaria pigmentosa

Rosemary

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Does anyone know of a support group, web site or other message board that I can contact concerning this condition? I have been treated since the age of 12 with various outbreaks to my neck of this skin disease. I am now on my third treatement of Accutaine which while it ceases the disease for a length of time.. the last being about 5 months, I find once I am off that treatment the slightest stress in my life makes the condition reoccurr. I am at a stage in my life that Im tired of trying to "explain" this rash on my neck as it is very painful looking at full break out and does resemble a burn. Any information that I can obtain will be appreciated. Anyone who has a family memember that may have this condition and any support group or organization that may deal with this would be appreciated. thank you
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