Connective Issues - Fall 2019


surgery and is doing great. Looking forward to learning!” said Diane. The Annual Conference has long been a gathering spot for friends from a range of genetic aortic conditions, but in 2019, we upped the focus, especially for Loeys Dietz and Vascular Ehlers-Danlos. “My husband and daughter were diagnosed with vEDS after my son passed away unexpectedly in 2015,” said Shelly Wooten of Arkansas. “I’m so excited about this Conference and being able to meet other families with vEDS and related conditions.” This year, for the first time, the general session medical presentations were broadcast worldwide by livestream and recorded for viewing

with friends was a top response among survey respondents. It’s often difficult to find people who “get it” in day-to-day life so the Conference, for many, is a place to fill that gap. “One of the hardest things is not knowing anyone else with our condition. I feel so alone, and while family is so supportive, they just don’t get it. My dad died when I was two, from aortic rupture, so I haven’t had anyone. That’s why I’m coming to the Conference finally,” said Ashley Wright of Michigan. Diane Burns and her daughter, Honor, both of Texas, came for Loeys Dietz syndrome education and connections. “We learned she has Loeys Dietz in 2019. She had heart

It’s been a couple months since our 35 th Annual Conference and it’s possible that the dust has finally settled in Houston. More than 600 community members, physicians, and volunteers descended upon “Space City” with much anticipation. The reasons for attendance were varied according to post-Conference surveys, but most came for four key reasons: to connect with knowledgeable doctors, learn more about living with a genetic aortic condition, connect with others who are also affected, and learn how to support a friend or loved one who lives with Marfan, vEDS, Loeys Dietz, or another genetic aortic condition. As usual, finding and reconnecting


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