Erdheim-Chester Disease (ECD) Community

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JCorkran
moderator

5th Annual International Erdheim-Chester Disease Patient & Family Gathering

October 27, 2017 New York, NY USA
The ECD Patient & Family gathering is the only conference focused on uniting those affected by Erdheim-Chester Disease from around the world to increase their knowledge of ECD, learn how to advocate for themselves in a healthcare system often unaware of their illness, and promote fellowship among patients and caregivers. Visit http://erdheim-chester.org/news/ecd-patien... for more information.

Register at http://events.r20.constantcontact.com/regi... Please email questions to Jessica Corkran at Jessica.corkran@erdheim-chester.org.

Go to the Rareconnect announcement here: https://www.rareconnect.org/en/community/e...

martacampabadal
moderator

The Erdheim-Chester Disease Global Alliance Welcomes Vanderbilt University Medical Center to the ECD Referral Care Center Network

Vanderbilt University Medical Center in Nashville, Tennessee is the most recent addition to the Erdheim-Chester Disease (ECD) Referral Care Center network. Nishitha M. Reddy, M.B.B.S., MsCI and her team of ECD-knowledgeable specialists now can collaborate with a large community of other ECD-knowledgeable doctors and researchers to provide the best care available to ECD patients.

Read more: http://erdheim-chester.org/wp-content/uplo...

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.
Regards
Tessa

JCorkran
moderator

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
E-mail: diamone1@mskcc.org
-Dr. Filip Janku - MD Anderson Cancer Center in Houston, Telephone: (713)563-0803
E-mail: fjanku@mdanderson.org
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 support@erdheim-chester.org or go to our website to register (http://erdheim-chester.org/join/). 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

Tihana
moderator

ECD COMMUNITY MAP

Hello everyone!

Maybe you already know that in the Members section there is a new world map. It is a more visual and fast way to contact other community members.
https://www.rareconnect.org/en/community/e...

3 important things:

1) To appear on the map you only have to edit your profile and add the location. If you already have done it, you can also specify your city, even zip code.
https://www.rareconnect.org/en/profile/edit

2) Unless you have the profile marked as public, the information on the map is only visible for members that have registered to the community. This means that visitors may see the map but not the spots and the links.

3) If you wish, you can also make your spot in the map only visible for your friends within the community. This option can be changed always from your profile.

If you have any question, leave me a comment below!

SandraRC
moderator

The ECD Global Alliance Welcomes Chinese ECD Referral Care Center

The Erdheim-Chester Disease (ECD) Global Alliance welcomes Peking Union Medical College Hospital in Beijing, China into its Referral Care Center network to help Erdheim-Chester disease patients.

Xin-xin Cao, MD leads the ECD-knowledgeable team at the first Referral Care Center in China. Cao, together with the group of specialists at Peking Union Medical College Hospital, has seen as many as 30 patients fighting the rare blood cancer.

"To be included in the Referral Care network means a lot to me and to my team. It means we are not fighting the disease by ourselves. We have a family. It is important to ECD patients, since the disease is so rare. The patients will feel more confident to see so many people working together and trying to cure the disease." Dr. Cao explains why becoming an ECD Care Center is important for ECD patients in China. Referral care centers provide the most up-to-date treatment available from doctors acutely interested in helping ECD sufferers.

The volunteer-based ECD Global Alliance has facilitated the ECD Referral Care Center network since 2015. Including the Chinese hospital, there are now 24 centers.

Notable institutes within the group include Memorial Sloan-Kettering Cancer Center in New York, NY, The University of Texas, MD Anderson Cancer Center in Houston, and The Mayo Clinic in Rochester, MN.

Learn more about the ECD Referral Care Center network at www.erdheim-chester.org/care-centers.

ECD and Low Testosterone

I recently returned from my second visit to NIH. After donating twenty nine viles of blood, I learned that my testosterone was very low. I also learned that low testosterone is common in men with ECD. I was given a weeks supply of patches at NIH. Almost immediately, I felt better and had more energy. I couldn't wait to be prescribed a treatment once I got home. With the improvement I've felt, which also includes mood, I would recommend that anyone who hasn't been tested for it, ask their doctor to check your level during your next blood test. It's made a difference in how I feel and function.

I've been on a testosterone patch for two years and it is still helping with energy and mood. The patch makes traveling through airports interesting at times, as I am usually patted down, and have been taken to TSA's little room. I'm currently on vemurafenib and the medicine has shrunken my testicles a little bit, but they are still there. No other complications. They were extra sensitive for about two months, but are back to normal. What a fun life we get to live.

In early 2013, my first issue was "granulomas" on my testicles. One of them was removed and biopsied and was found to have the granulomas comprised of histiocytes among other cells. In November of 2013, I had trouble walking and could not feel below the ribs very well. I was found to have a tumor on my spine that was compressing it. they removed enough to allow control and feeling as normal. The biopsies again showed histiocytes as the main component. I have either ECD or RDD, they do not know which for sure. Between the steroids and chemo and ECD or RDD and the removed testicle, my testosterone was VERY LOW. I am now on the patch and feel much better. My ECD Dr. at Mayo thinks the low T is due to the testicle being removed, but I don't think so. Either way, get it checked and get treatment if needed.

I wonder if this also is one of the reasons why ECD patients feel tired much of the time? I really do not get tired anymore? Also, do female ECD patients have any hormone "problems"? that possibly cause their pain?

JCorkran
moderator

2017 Annual International ECD Patient & Family Gathering

Save the date October 27, 2017 for the 5th ECD Patient and Family Gathering. Join others fighting ECD to meet the experts, learn more about ECD, and hear about current research studies nationwide.

Registration and details will be available soon.

Jessica