Barry, an active family man, was diagnosed with the histiocytic
disorder, Erdheim-Chester Disease (ECD) on January 19, 2021. Two years prior, in 2018, Barry was also diagnosed with Diabetes Incipidus (DI), another rare disease that is a very common and manageable amongst histio patients. For his ECD diagnosis he went through an arduous 9-month journey during the beginnings of COVID trying to find a diagnosis. The disease presented itself primarily in his eye orbits and abdominal cavity and can be life threatening.
He is thankful for the support of his family and the heroes on his medical team for getting him through this difficult rare disease diagnosis. Without medical advancements and the research funded by the Histiocytosis Association and the
Erdheim-Chester Disease Global Alliance (ECDGA), Barry's outcome could've been fatal. Barry has a team of ten doctors that monitor his progress every six months.
His wife, Melinda, now works for the Histiocytosis Association as the Outreach Program Coordinator assisting in the mission of the Histiocytosis Association.
Barry and his wife are dedicated to raising awareness about histiocytic disorders, providing educational and emotional support, and funding research leading to better treatments and a cure.
Barry is now on a successful treatment plan and continues to live his life to the fullest!