My husband had this disease. From what I understand, there are two forms:
Mastocytosis, which presents large reddish blotches on the skin that are raised and often itch (urticaria pigmentosa). The treatment he had for that was a UV lamp and antihistamines.
Several years later he had full blow Systemic Mastocytosis. The mast cells proliferated and attached themselves to vital organs, and ran rampant in his marrow. His symptoms varied, as did his treatment.
We contacted NORD (National Organization for Rare Diseases), and got names and phone numbers of other people with the same disease. Their symptoms (like Jim's), were all over the map.
Some people live with the disease and it doesn't progress. Others aren't as lucky. Jim died in March, 1997 from liver failure due to the massive amounts of iron deposited from all the transfusions he had to have.
We had a wonderful doctor who stayed with Jim through it all. We had a wonderful staff on his final day, they were kind, gentle, loving with Jim and with me.
My prayer for you is that this disease will not progress. I also firmly believe that attitude is IMPORTANT! I am convinced Jim lived longer because he was not going to let it sink him.
Good luck to you both.
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clancy
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clancy
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