Connective Issues Winter 2023

Finding Community Meant Not Being Alone

By Tyler Farley, Raleigh, NC One day I was a normal kid, then the next I learned I had VEDS. I was diagnosed in 2014 at the age of 17 just before I was just about to graduate high school. I was very active before my diagnosis – weightlifting and playing sports like travel soccer, basketball, and golf. Looking back, the only signs were that I always bruised easily and I was born with club feet. One day, I randomly felt a pain I’ll never forget, and it led me to go to the ER. After hours of waiting, I got a CT scan that revealed I had a perforated bowel. From there it was a roller coaster. I was admitted for two weeks as the doctors could not figure out why this was happening. I was even asked if I ate nails or glass! Then a resident surgeon noticed my club feet and put the pieces together. I was told I had

VEDS; I had no idea what that was. At 18, I went from one pediatrician to a new team of doctors. I felt like I had no resources, and I was stuck. Nothing prepared me for this diagnosis, but I kept strong and

“It took me eight years to find anyone just like me.”

p Tyler and his dog, Stormy

It took me eight years to find anyone just like me. Now 26, I am so glad to have

others I can talk to about VEDS because I was alone for a long time. The VEDS Movement helped me get the resources and support I needed, and now I’m doing my part to help others. I don’t take things and people for granted, and I’m super grateful for all I have. I don’t know how much time I have to live with this condition, but I know I’m going to do my best to have the time of my life while I can! Tyler, who lives with his dog, Stormy, enjoys hanging out with his friends in Raleigh, NC, going to Carolina Hurricanes hockey games, and living life to the fullest.

focused on what needed to be done to have a great life. I went to college, graduating in 2019 with a bachelor’s degree in finance. I have a great job with good healthcare, and I set myself up to be comfortable with VEDS for now. I am still active in some sports like hiking and skiing. I used those voices that told me I couldn’t do anything to motivate me to keep grinding. My advice is to do what you want to do. You have to be cautious, but there’s no point in sitting around wasting time. Any diagnosis is not easy, especially VEDS, but there has to be some light at the end of the day.

To share your VEDS story, visit the Share Your Story page under the Community Corner tab at TheVEDSMovement.org. Be sure to check out the numerous helpful resources and support groups that we o ff er our community.

Awareness Project Educates Emergency Medicine Professionals on VEDS The VEDS Movement continues to make strides in medical education about Vascular Ehlers-Danlos syndrome (VEDS). Educating healthcare professionals in hospital emergency departments is a high priority because too often people with VEDS have sudden medical complications that can be

deadly if they are not identified and treated quickly. As part of The VEDS Movement’s targeted outreach e ff orts, the American Academy of Emergency Medicine has

approved a VEDS CME course, created by The VEDS Movement and the Sullivan Group for its members. This course will be available free to all AAEM members throughout 2023 thanks to a grant from the Daskal Family Foundation. Scan the QR code to learn more about this project.

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