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ECDhope
@ecdhope

Posts: 4
Joined: Jul 13, 2017

ECD

Posted by @ecdhope, Jul 13, 2017

Anyone out there diagnosed with Erdheim Chester disease?

REPLY

Hi @ecdhope, welcome.
I’m unfamiliar with Erdheim Chester disease, but have been reading about it on the NORD website here: https://rarediseases.org/rare-diseases/erdheim-chester-disease/
Can you tell us a bit more about ECD and you? What tissues or organs are involved and what symptoms are you managing? Have you been involved in clinical trials?

@colleenyoung

Hi @ecdhope, welcome.
I’m unfamiliar with Erdheim Chester disease, but have been reading about it on the NORD website here: https://rarediseases.org/rare-diseases/erdheim-chester-disease/
Can you tell us a bit more about ECD and you? What tissues or organs are involved and what symptoms are you managing? Have you been involved in clinical trials?

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ECD is a histeocytic neoplasm. Basically, one with this cancer overproduce wbc/lymphocytes/macrophages and tumors are formed in major organs. I currently have kidney involvement. i was diagnosed at Mayo in April of this year. i see Dr Ron Go. i orginally had cardiac involvement but have responded to zelboraf. About 50% have the BRAF mutation. i orginally had a major sore throat and then 3 days later a UTI and felt something was wrong. The docs in my home town area could not figure it out so i traveled to Mayo. This disease has varied presentation and less than 1000 people in the world have been diagnosed.

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