By Chris Evans – ECD Awareness Week 2020

My sister, Raina, was diagnosed with a histiocytic disorder similar to Erdheim-Chester Disease in many ways. She fought valiantly against the disease for several years, even enduring an unusually painful bone marrow transplant. Thankfully, I was a match for her and it extended her life with us, at least for a short time. She passed away early last year within a few months of the diagnosis of her recurrence.

It was my experiences with Raina, through her journey, that brought me to the Erdheim Chester Disease Global Alliance (ECDGA). My family and I initially discovered the ECDGA during the difficult diagnosis and early stages of her treatment. The compassion of the staff was remarkable and they spent time giving us advice on seeking oncological specialists- like the amazing doctors: Dr. Eli Diamond, Dr. Eric Jacobsen and  Dr. Ken McClain. Advice on social services was invaluable and would help my sister cope and manage aspects of her treatment and indeed her day to day life.

When trying to cope with a rare disease like ECD, or other rare histiocytic disorders, you soon realize there is not a lot of information available and there is a lack of awareness compared to other diseases. This leads to additional challenges for patients already struggling through a difficult set of circumstances. My experiences with my sister, and in talking with ECD patients during their weekly calls, has shown that very often, this lack of awareness is not only with people in general, but includes healthcare professionals as well. They may be the professionals we depend on for testing, diagnosis, treatment options or simply to approve your insurance claim. This leads to having to travel further distances to receive specialized care as well as other issues ranging from financial to simply filling prescriptions.

Raising awareness, and sharing the most recent advances for this rare class of diseases, as fast as possible, is vital to advancing patient care for those in need. ECDGA is on the front-line and I am honored to be part of helping this community in any way I can, now, and in the future.