In this episode, Medical Stories speaks with two families with children born with x-linked myotubular myopathy (XLMTM or MTM), a rare muscle disorder. In Methuan, Massachusetts, Erin and Mark share how their son, Will, embraced life to the fullest despite the disease. Meanwhile, in Virginia Beach, Marie relates how their family of five dealt with the reality of providing 24/7 medical care to her two sons born with XLMTM, Reid and Paley. United by their love for their children, Erin and Marie later explain how their experiences led them to build a community to support other families affected by the disorder. Later, Medical Stories shifts focus to Pittsburgh, where 33-year-old Corey, a former naval aviator, battles a rare genetic condition called Wilson's disease. The National Library of Medicine notes that the disorder can affect individuals in several ways, causing liver disease as well as problems with the nervous system. Corey was devastated when he received his diagnosis, as it meant he had to give up his lifelong passion of flying. But as he started to lose his will to live, he met his future wife, Anna, a physician who helped him cope with the disease. Medical Stories spends time with the couple as they explain how Corey learned to "build a whole new identity" while living with Wilson's. This episode also features in-depth commentary from renowned experts Michael Lawlor, MD, PhD, CEO, Diverge Translational Science Laboratory, Professor, Medical College of Wisconsin. and Michael Schilsky, MD, Professor of Medicine, Yale University Medical Center, Director, Center for Excellence for Wilson Disease at Yale.
Broadcast In: English Duration: 0:26:44