Connective Issues - Fall 2019

u The Living Sucessfully Panel included community members Chris Heaney, Mary Sheppard, MD, Megan Boeglin, and Betcy Mattarita.


meant looking for places that either had a recognized center of Marfan expertise, or at least had a medical school and a world-class reputation for advanced cardiac care. I wanted a place with an established Marfan community, as I appreciate the value of connection with people who understand how complex our lives can be, and also to help identify good doctors. Interesting culture, good mass transit, and climate were also things I looked at when considering a permanent relocation. Megan Boeglin - My journey with vEDS began in 2007, though I wasn’t diagnosed for another 9 years. When I was finally diagnosed, I was 27-years-old with two aneurysms. My life as a “walking time bomb” began. After pleading my case with our geneticist, I was tested for vEDS. Of With a lot of patience, understanding, and tenacity, I've developed working relationships with our physicians and we share a mutual respect for managing this condition. - Mary Boeglin, vEDS community member

When our first Annual Conference was held in 1984, the idea of a Living Successfully Panel would have seemed out of place. In those early years, conferences were not focused on quality of life as physicians, researchers, and families were solely focused on extending the lives of those affected by Marfan syndrome. Now, the Living Successfully Panel features people with Marfan, vEDS, Loeys Dietz, and other genetic aortic conditions who share their journey with their diagnosis. The panelists, age 30-60, represent a range of life experiences and offer valuable advice for how they improve their quality of life, despite their diagnosis. Betcy Matarrita – For me, living in Costa Rica, being able to come to Walks and Conferences means a lot. Meeting people who actually understand the struggle and are always there for me, no matter the distance or circumstances, has helped me to open up about my medical condition to others. It’s given me the courage to educate others about Marfan and to show that you can live a normal life as long as you choose to live with positivity. As a young adult, I understand how hard it is to fit in, and we often question our beauty and worth. But, I’ve learned not to worry about things I can’t control and just to be me. Mary Sheppard, MD – During high school, I became involved by

showing the Foundation’s video about aortic dissection to over 120 medical professionals throughout the state of Kentucky. During college, I had my aortic root replaced. Then, I went to medical school. Now, I am a physician- scientist at the University of Kentucky, doing exactly what I dreamt about as an eight-year-old girl. I run an aorta clinic, caring for patients with Marfan syndrome and related conditions. I also have a research lab studying mice who have Marfan syndrome. I love the work I do and I feel incredibly fortunate to be alive. However, the key to living successfully, in my opinion, has been the personal relationships that I develop with those around me. I am incredibly fortunate to have a wonderful, supportive husband. We have two awesome daughters, as well as a son who is due in November. My parents and siblings, as well as seven nieces and nephews, live within 20 minutes of my house. It is an honor to be part of their lives every day. Throughout my life, these relatives and friends have helped me embrace my diagnosis and make the most of having Marfan syndrome. Chris Heaney – I recently moved from Austin, TX, to Durham, NC. My move was prompted by a need to live in a city where I could get a great level of medical care and could see myself living the rest of my life. I wanted to find a city that could support the quality of life I want. That


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