by Asmaa Javed | Dec 31, 2024 | Voices of ECD
Some risks are worth taking in this story of the Erdheim-Chester Disease miracle baby. Alice Nilsen, is a 39-year-old Erdheim-Chester Disease (ECD) patient and mother to a beautiful little girl, Marie. Her story to a diagnosis and thereafter, is nothing short of a...
by Asmaa Javed | Dec 31, 2024 | Voices of ECD
I Am Rare What I want others to know about my experience with Erdheim-Chester Disease. By Janet Bunge Kentucky – September 10, 2018 In early 2015, after ten years of “What is going on, and I really am not a whiny woman,” I was diagnosed with Erdheim-Chester Disease...
by Asmaa Javed | Dec 31, 2024 | Voices of ECD
Gerry Gallick shares his journey to an ECD diagnosis and how he has coped with the new normal.
by Asmaa Javed | Dec 31, 2024 | Voices of ECD
I did every test under the sun to find out what it wasn’t. Finally, an answer; Erdheim-Chester Disease (ECD).
by Asmaa Javed | Dec 31, 2024 | Voices of ECD
“I studied everything I could about ECD and thought I had a death sentence coming very soon.” – by Hugh Welborn.
by Asmaa Javed | Dec 31, 2024 | Voices of ECD
The journey to a diagnosis can be stressful for the entire family. Positive support is critical to a patient’s outlook and response to the news. Despite the effects of COVID and the rarity of his newly found disease, William Dean finds his path and fights to stay...
