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I've just been diagnosed with Erdheim-Chester disease which is extremely rare.

By Anonymous October 27, 2011 - 6:55am
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My own Dr. hadn't heard of it. I'm going to a rheumatologist next. Has anyone had this disease and what can I expect. What is the diagnosis? I'm 70 years old and in relatively good health. Please help? Is there a group of people with this same disease I can get in touch with. Thanks so much.

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Dera Anonymous,
I am so sorry to hear that you have been affected by ECD. It is a most puzzling diease, but there are other patients you can connect with. The ECD Global Alliance is a group of patients and loved ones who have been affected by Erdheim-Chester Disease. Please register with this organization at www.erdheim-chester.org.

The organization has an online chat session every Saturday at 3 pm Eastern time. You can join in by going to - http://www.chatzy.com/427437211406 and following the prompts. This session is attended by ECD patients and their families. It is a great way to connect with others who have been living with ECD. I hope you will join.

If you would like more information, please email [email protected]


October 28, 2011 - 6:52pm
(reply to Anonymous)


Thanks so much for posting this! I hope it helps those who are affected by ECD.

Thanks again,


November 3, 2011 - 7:00am

Hi Anonymous,


Erdheim-Chester disease (ECD) is a rare multisystem disorder of adulthood. It is characterized by excessive production and accumulation of histiocytes (cells that play a role in responding to infection and injury) within multiple tissues and organs. In those with ECD, sites of involvement may include the long bones, skin, tissues behind the eyeballs, lungs, brain, pituitary gland, and/or additional tissues and organs. Associated symptoms and findings and disease course depend on the specific location and extent of such involvement. The specific underlying cause of ECD is unknown.

Please feel free to start a group here: https://www.empowher.com/groups/create

You can also do more research and post your findings for all others with ECD. You'll find some more information these resources:

Histiocytosis Association of America
302 North Broadway
Pitman, NJ 08071
Tel: (856)589-6606
Fax: (856)589-6614
Tel: (800)548-2758
Email: [email protected]
Internet: http://www.histio.org

National Institute of Neurological Disorders and Stroke
P.O. Box 5801
Bethesda, MD 20824
Tel: (301)496-5751
Fax: (301)402-2186
Tel: (800)352-9424
TDD: (301)468-5981
Email: [email protected]
Internet: http://www.ninds.nih.gov/

Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
Tel: (301)251-4925
Fax: (301)251-4911
Tel: (888)205-2311
TDD: (888)205-3223
Email: http://rarediseases.info.nih.gov/GARD/EmailForm.aspx
Internet: http://rarediseases.info.nih.gov/GARD

ECD Global Alliance
13065 Hwy 1146
DeRidder, LA 70634
Tel: (337)515-6987
Email: [email protected]
Internet: http://www.erdheim-chester.org



October 27, 2011 - 8:25am
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