Connective Issues Spring/Summer 2026

From Lived Experience to Healthcare Professional How community members are shaping the future of care.

Adam Bitterman, DO, FAAOS | Orthopedic Surgeon Dr. Bitterman’s condition has helped shape his understanding of medicine and his appreciation for the responsibility that comes with it. “My personal connection to Marfan syndrome introduced me to medicine long before I ever formally stepped into it,” said Dr. Bitterman. “As a patient and as someone closely connected to the Marfan community, I experienced firsthand the uncertainty, the reliance on expert care, and the profound impact that thoughtful, compassionate physicians can have.” That perspective guides him during every patient interaction. “I understand what it feels like to sit on the other side of the exam room, to process complex information, and to carry uncertainty beyond the visit itself,” he said. “Because of that, I place a strong emphasis on communication, ensuring that patients feel heard, informed, and supported.” Advice for others: First, recognize that your lived experience is not a limitation. It is a strength. It gives perspective that cannot be taught in a textbook. Second, be prepared for a long and demanding journey, but don’t lose sight of why you started. Finally, seek out mentors and build a support system. Across our community, individuals affected by Marfan, Loeys-Dietz, VEDS, and related conditions are choosing careers in healthcare, bringing with them a perspective shaped not only by training but also through lived experience. We are honored to share a few of their storie s: For many in the Marfan Foundation community, time spent in hospitals, clinics, and exam rooms begins early, and often under difficult circumstances. But for some, those experiences spark something more: a calling to help others.

Recognize that your lived experience is not a limitation. It is a strength. It gives you perspective that cannot be taught in a textbook. ~ Dr. Adam Bitterman

Nick Metz | Aspiring Physician and Researcher Nick’s path to medicine was guided by both loss and mentorship.

After his younger brother, Connor, passed away from an aortic dissection caused by undiagnosed Loeys-Dietz syndrome, Nick became involved with the Marfan Foundation and began volunteering at conferences. “While volunteering, I met Dr. Alan Braverman, who shared with me that he had also lost a brother to a connective tissue disorder and was inspired to dedicate his career to helping others with these conditions,” Nick said. “Seeing how he transformed a personal tragedy into a lifelong mission deeply impacted me.” That experience helped define his path into healthcare. “I wanted to follow their lead, support families during their most difficult moments, and help prevent other families from experiencing the same loss that mine did.” Advice for others: The loss of my brother and friends has been incredibly painful, but it strengthens my determination to continue down this path. Each experience reinforces why this work matters and motivates me to dedicate my life to preventing these tragedies in the future.

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