Good resources for mastocytosis

December 20, 2007 7:32 PM

Posting for a friend-filter: What are the best resources for information about cutaneous mastocytosis?

My friend has a very cute toddler daughter who will turn 2 early next year. Mom noticed strange splotches on the daughter's skin over the last year or so. The doctors checked out the splotches and found that the daughter has a mild case of cutaneous mastocytosis, a mast cell disorder. The doctor expects the daughter's condition will clear as she approaches adulthood.

The mom found many sites about mastocytosis through Google, but hasn't found one which has a lot of information or one which has a community she feels comfortable with -- she keeps running into a lot of panic, which is making her more worried but no more informed. The sites seem generally geared toward more severe cases.

Does anyone have any favorite mastocytosis resources? Do you have stories about milder cases? Thanks!

posted by debgpi to health (2 comments total)

Try mastokids.org.
posted by chudder at 8:06 PM on December 20, 2007

I just did some searching for a friend on this same topic recently. Here are a few I found:
1. Good general overview from a reliable source:
http://www3.niaid.nih.gov/healthscience/healthtopics/mastocytosis/overview.htm

2. Pictures and general description from a well known medical encyclopedia http://www.nlm.nih.gov/medlineplus/ency/article/001466.htm

3. A list of current clinical trials, some of which are recruiting:
http://www.nlm.nih.gov/medlineplus/ency/article/001466.htm

From what I can gather, this is a pretty rare condition. There are tests that identify it pretty easily though.
posted by cosmicbandito at 6:52 AM on December 21, 2007