Barry Atnip
Patient
Erdheim Chester Disease (ECD)
Barry is a husband of 33 years, the proud father of two sons, and a grateful father-in-law to a wonderful daughter-in-law.
His rare disease journey began in 2018 with excessive thirst and urination, leading to a diagnosis of Arginine Vasopressin Deficiency (AVP-D), a rare and little-known condition that was his first sign of histiocytosis. In 2020, new symptoms escalated into a nine-month diagnostic odyssey. On January 19, 2021, Barry was diagnosed with Erdheim-Chester Disease (ECD), a rare blood cancer caused by the BRAFV-600E genetic mutation.
Barry manages his disease with targeted therapy, taking 10 pills daily, two injections each month, and receiving care from a team of 10 physicians. Twice a year, he flies across the country to Memorial Sloan Kettering to see two specialists, ensuring he receives the most advanced care. Despite the demands of treatment, Barry lives an active life, working, spending time with family, and embracing each day with gratitude.
He enjoys hiking, skiing, weight training, and organizing his garage, and regularly shops at Home Depot, Walmart, and Costco. Professionally, he serves as CFO of his family’s snack company, started by his father, and generously donates snacks for histiocytosis events. Barry also believes in funding research to improve treatments for others.
His journey has inspired his wife, Melinda, who serves as a Histio Ambassador and Outreach Program Coordinator for the Histiocytosis Association, spreading hope and connection to patients and families navigating histiocytic disorders. From AVP-D to ECD, Barry’s story embodies courage, resilience, and hope, inspiring both his family and the rare disease community.
