Hello, my name is Maria Vacca and I live in Ontario. I was diagnose with Erdheim Chester Disease over 10 years ago. I struggle every day with the various complications of the disease and my goal is to get in touch with people around the world who also have been diagnosed and possibly exchange any medical information that has been helpful to them.
2 comments:
Hi Maria,
My father (aged 70+) has recently been diagnosed with ECD. We can find very little material about it, and what we can find is extremely technical. Can you refer me to a good site/book? I would appreciate any sharing of information that you can.
Thank you.
A few ECD patients have found each other via the internet and formed an online ECD support group. Please email
ecdsupportgroup@aol.com
for more information. Or, see the Erdheim-Chester Disease Message Board at
www.histio.org
for more information. Wishing you all the best.
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