National Sarcoidosis Organization

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Rachel


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Joined Jan 29 2012
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FEMALE
Ottawa, Ontario
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National Sarcoidosis Organization

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My 8 year old daughter, Marie-Eve, was diagnosed with early-onset sarcoidosis (EOS) at the age of 2. EOS, aka Blau Syndrome, is hereditary, and is caused by a defect in the NOD2 gene. This means she has 50% chance of passing this gene to her own kids. the granulomas are the same as those found in sarcoidosis; however it has a different pattern than sarcoidosis found in adults and usually involves the eyes, joint and skin. it is very similar to JRA. She has been on methotrexate injections, naprosyn and prednisone since her diagnosis at 2 y.o. Marie-Eve is such a strong little girl, she brings so much joy to each of us everyday.

We pray there will be a cure someday, or at the very least, better treatment options.

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