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]