Connective Issues Fall 2022

p Brandon, Heidi, and Grace shared their personal stories with attendees. PERSONAL PERSPECTIVES PANEL

Connecting with others in the community and hearing their stories is one of the most valuable aspects of attending a Foundation event. The Personal Perspectives Panel at the E 3 Conference featured individuals with or affected by Marfan, VEDS, and Loeys-Dietz who bravely shared their life experiences and offered valuable advice on how they have improved their quality of life. u GRACE MEYERS – I’m 18, I live in Michigan, and I have Marfan syndrome. I was diagnosed at the age of four by my pediatrician. My mom has been a huge advocate for my health my entire life. About a year after I was diagnosed, my mom found out about The Marfan Foundation. She attended a conference in Boston and learned a lot. I went to my first conference when I was 10 years old. I actually met my best friend, Grace Barnhart, there. As I got older, Grace and I started to interact with the Foundation more. We got very involved in the community and were able to meet a lot of people like us. The support and connections I have made have truly changed my life. I am very lucky to know a lot of people with my condition and be able to have so much support. Having those people to text at any time and knowing that they understand me and can either provide advice or just love and support is what I need to get through everything Marfan throws at me. u BRANDON CRAWFORD – I'm 28, I live in a small town in eastern Kentucky, and I have Loeys-Dietz type 1. Growing up, we always knew I had limitations but to say they changed me would be a lie. I don’t know who I would have been had I not had this condition.

I've made the best of life that I can. I never played sports, but I never wanted to; there were plenty of things I could do and loved. No, I never jumped out of an airplane nor will I ever. I always hear the term normal - that I'm not like everyone else. But I'm happy with how I am. I've been the first for so many things and that's a badge of honor for me. To date, I just recently had surgery number 20. For all of our newly diagnosed friends, I would like to say: you're not alone. This community is so knowledgeable. This room is full of people who understand where you are. There are numerous Facebook groups for families and patients to connect and hear from others. u HEIDI GREEN – My nine-year-old daughter was diagnosed with VEDS last year. The diagnosis came after eight years of trying to find answers and being told that she's perfectly healthy and there's nothing wrong. Finally, after persisting in getting genetic testing done, it confirmed that she has VEDS. How will she be able to handle this diagnosis? Not just the physical worries and the lifelong medical involvement, but also the mental strength it takes to not have it totally consume you. I tell her, and have to consciously keep reminding myself, that we don't have to stop living, but we do have to make modifications for her to live her life to the fullest. Another thing that has helped with coping is knowing you're not alone. The VEDS Movement and the community have been incredibly supportive. For example, my daughter attends the monthly Kids Club, and I attend the parent support group when I can. Try to stay positive and be present in the moment because the future for VEDS is bright.

One reoccurring message from the panelists was the importance of connection to community. Please take advantage of the many opportunities to gain support and make lasting bonds with others through our online support groups, Walk for Victory events, symposiums, camps, and much more. Visit the Get Involved tab at Marfan.org .

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