Erdheim-Chester Disease (ECD) Community

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Extreme pain

I have site incredibly and interesting as I was I hospital for 4 month before I was diagnosed. I live on the Gold Coast Queensland Australia and I think there's only 3 of us here that have ECD, this is only new forme as I was diagnose last may or may not be able to help. I have ECD and Langerhans I suffer from pain in my joins daily. My knee caps, elbows hands and other more places but the haematology can't tell me if it I ECD which I think is part of this condition yes? And: 2 I was hospitalised last week with the most incredible pain I had ever endured it March I did chemo for 12 week and it done nothin so I have the braf cell so I can go on VEMURAFENIB 240mg twice in the morning and twice at night . My bone pain is extremely sore as when I touched arm bones and especially my shoulder blades I was in a lot of pain the dr don't know what it's from and they masked it up with a slow release morphin tablets as well as 25 mg of Fental patches I just need the dr to why I'm getting the pain. My question is: is the aches that I have on a daily basis is it ECD which I can live with but my specialist don't know and secondly the epersoide of last weeks events of extreme pain in the bone is that part of ECD was it some sort of flair up where it's going to happen again or its something else. Can you help or do you know of some that knows the answer as I down know if my Heamotologist knows, I thought if they didn't know you would email the right people for this info. Can anyone help as that would be much a appreciated.


Hello Terryann,
I am sorry to hear you are having such terrible pains. There are several things you can discuss with your doctor, including contacting one of the following:
1. Prof. Miles Prince in Melbourne (who sees a few of the 13 other patients in Australia)
2. Your doctor can contact the ECD Care Center doctors here in the US that can help with your case. Here are a couple to try.
-Dr. Eli L. Diamond - Memorial Sloan Kettering in New York, Telephone: (212)639-7576
-Dr. Filip Janku - MD Anderson Cancer Center in Houston, Telephone: (713)563-0803
Some ECD patients who have found Vermurafenib difficult to tolerate have tried dabrafenib to have less side-effects. This would be something you can discuss with the other doctors as well.

Are you registered with the ECD Global Alliance? You can email us at or go to our website to register ( Once registered we can put you in contact with other people who suffer from ECD. This group can help you. By joining the ECDGA you will learn that you are not alone.

I hope this is helpful to you and that you find relief very soon. Please let us know if you need anything else.

Kind regards,
Jessica, ECDGA Staff