urticaria pigmentosis

Cynthia - posted on 01/30/2014 ( no moms have responded yet )

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I was diagnosed with urticarial pigmentosis in 1985 it was very scary and I was told only 35 folks were known to have it at the time. I was very sick, I could only eat salads, chicken, rice krispies and some vanilla ice cream. I had severe stomach aches, fainting, skin eruptions, low blood pressure. I had Dr. Kruger at the University of Utah and an oncologist who put me through photo light chemo therapy and I had no issues until 7 years ago. I was injured took different drugs which woke it up. As an adult it is known to go to sleep until one does something to wake it up. There is hope. I have to be very careful what I eat and I'm fine. I really think my granddaughter has had it but seems better now at 9. I now see Dr. DelZoppo at Harbor view Hospital in Seattle. Dr. Garton at the UW is another doctor who knows about mast cell conditions. Good luck with your babies.

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