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Old 10-14-2007, 09:45 AM   #1
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Join Date: Oct 2007
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natejewel HB User
Re: Systemic Mastocytosis

Hi, everyone. I am new to this and am having difficulty figuring out were to post. My 22 month old daughter was diagnosed with mastocytosis. They are going to test to see if it is systemic. She has already had one episode of at daycare were she couldn't breathe. Here allergies are terrible and her brown pigments are spreading weekly. They were noticed at nine months on her back. They have since spread to her abdomen, shoulders, and now down her arms.

To top it all off I have recently been diagnosed with a genetic disorder, hemochromotosis. My body doesn't excrete any iron. It primarily stays stored in my liver and joints. We have done blood work on her and her levels are suspicious. She is going back to have the genetic coding soon.

I was wondering if anyone had any advice or knew if these two disorders might be related. We were told that she might outgrow the mastocytosis. If not then it might lead to cancers. Any help would be appreciated. Thanks

 
Old 10-17-2007, 03:34 PM   #2
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jxn790 HB User
Re: My 22 month old daughter was diagnosed with mastocytosis.

hi i am new to this also, your message was one of the first iv read, it caught my eye because you are going through some things with your daughter my daughter is 20 months i would just like to say hope evrything goes well and your daughter and hope your daughter will out grow this my daughter is now in hospital with numerous of things that is all complicated so i know how worrying it is to be going through health problems with a child. I have never heard of mastocutosis but as it is a new name to me i can do some research on it ill let you know if i get some good information.

 
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