Rare Diseases

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There are diseases out there that Dr.'s haven't even heard of, yet. They're not colds or a trivial plea for attention. They're chronic, painful, life threatening illnesses that have often gone many years w/out diagnosis. Many folks plagued by them are struggling to get them known. But, the media likes diseases that effect millions. My own affliction is called Erdheim-Chester disease (erdheim-chester.org) and has been diagnosed between 300 and 350 times since its discovery in 1933. We've recently lost another "family" member to the illness. There are about 51 known cases worldwide. So, we take it personally when one of us falls victim & are greatly concerned when one is, on rare occasion, added to our ranks. So, learn (histio.org, erdheim-chester.org, http://waltergoodintentions-blogspot.com & http://www.facebook/?ref=tn_tnmn#1/groups/24155057921763).