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...
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...
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...
