127. A Family Touched by Vascular Ehlers Danlos Syndrome: The Life & Legacy of Lizzie Gasser

In the last episode, episode 126, we discussed pregnancy and aortic disorders as part of The CardioNerds Cardio-obstetrics Series. This episode brought to mind episode 76, where our colleagues from the Cleveland Clinic taught us about a woman named Lizzie Gasser, who at the young age of 27 tragically presented with postpartum pulmonary edema, found to have papillary muscle rupture, and was ultimately diagnosed with Vascular Ehlers Danlos Syndrome (VEDS) at autopsy. This case has been published in JACC Case Reports: CardioNerds Corner. Now, in this very special episode, we meet Lizzie Gasser, beyond her heart disease through the eyes of her loving husband, Todd Gasser. Her legacy underscores the importance of seeing our patients as people beyond their illness, in the context of their lives, values, and loved ones. This powerful discussion is led by Dr. Erika Hutt (cardiology fellow at the Cleveland Clinic) and Dr. Eunice Dugan, (internal medicine resident at Johns Hopkins Hospital). Dr. Harry “Hal” Dietz (professor of pediatrics, an associate professor of medicine and an assistant professor of neurological surgery at the Johns Hopkins University School of Medicine and a leading authority on genetic aortopathies (including Loeys-Dietz Syndrome which carries his name). Audio editing by CardioNerds Academy Intern, Dr. Maryam Barkhordarian. This episode is brought to you in collaboration with the VEDS Movement. The VEDS Movement’s mission is to save lives and improve the quality of life of individuals with Vascular Ehlers-Danlos Syndrome (VEDS). By pursuing the most innovative research, educating the medical community, general public and affected individuals, and providing support to patients, families, and caregivers, The VEDS Movement, which is a division of The Marfan Foundation, charges forward and improves the outcomes for those living with VEDS. Individuals affected with VEDS can access medical webinars presented by the experts, join support groups, get involved in events and research, and donate by visiting TheVEDSMovement.org. Providers can also find resources, including CME opportunities, at TheVEDSMovement.org. CardioNerds Case Reports PageCardioNerds Episode PageCardioNerds AcademyCardionerds Healy Honor Roll CardioNerds Journal ClubSubscribe to The Heartbeat Newsletter!Check out CardioNerds SWAG!Become a CardioNerds Patron! Photos & Youtube videos featuring Lizzie Gasser and her family https://www.youtube.com/watch?v=W4sVuctrUZs&t=1s Video from the VEDS movement that Lizzie's family is interviewed in. Their interview is from 7m30s - 17m16s https://www.youtube.com/watch?v=6CeXYnZHhbg Video of Lizzy's life life that a friend put together. Episode Guests Dr. Erika HuttDr. Eunice DuganDr. Harry “Hal” Dietz CardioNerds Case Report Production Team Karan Desai, MDAmit Goyal, MDDaniel Ambinder, MD