Rare Diseases

United States
April 22, 2012 4:50pm CST
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).
1 response
• United States
22 Apr 12
I am sorry you have Erdheim-Chester Disease, but good for you for coming on here and raising awareness. I also have some progressive rare disease that still has not been diagnosed that I stuggle with daily. If you ever need to talk, just send a message.