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my son Evan has a rare bone disease called "Langerhans Cell Histiocytosis.and im trying to find other familys with children with the same disease.Evan is three years old,we fond out last january and i still havent talked to any familys.i just need to talk to someone.
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Have you seen this site http://www.histio.org ? It looks like they have a message board with a topic of LCH in children. I'm sure you will find other there.
Amy
SWAN USA
My son Elliott (now 4) was diagnosed with LCH this past December. He is now on month 7 of 12 of his chemotherepy. He has multi-focal bone disease with rib, jaw and skull involvment.
Where is your son's LCH? How is he doing? What treatment is he receiving?
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