As we reflect on the trials and triumphs of our community members, we want to thank the supporters that come through for those fighting every single day. Your support is not just about your loved one, but about the future for all families faced with Erdheim-Chester Disease. Your provisions have come in all forms, and we appreciate everything you do!
A story of a young rare disease patient fighting over a decade for the answers to his illness. “I remember the first time I was sent to the doctors at the hospital when my MRI came back showing lesions. There weren’t any beds for me at the hospital, we had to check-in through the ER. My mom and I sat in a chair for hours waiting to be able to get a room. I fell asleep with my head on her. I was only 6-7 years old. Little did I know it would bring this ECD journey.”
Time is of the essence with this disease and it had been destroying my body unknowingly for 14 years.
Last updated: December 16, 2021
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