Vascular EDS does not stop me from living life

Posted June 5, 2019

By Lynley W.

Hi, I’m Lynley, and I have vascular Ehlers-Danlos syndrome.

I was born club-footed; my feet were almost completely turned around. Doctors told my parents that I would be in a wheelchair for all of my life. I am happy to say I am not in a wheelchair! I’ve had multiple surgeries and multiple casts on both feet before I turned one years old. I still walked pigeon-toed until I was 6. I had a heel cord surgery on both legs. My dad had vEDS, he passed when I was 9. He had it more severely than I do. I didn’t have any big problems until I was 19. I had chest pains for a couple of days and thought nothing of it. I went to an urgent care; I couldn’t catch a deep breath and I was non-stop coughing. They did x-rays and told me I was having a pneumothorax. I was so scared, I called my mom she came and got me. We rushed to the emergency room. When we got there my mom explained everything to the receptionist and we got into a room. They did more x-rays. My lung was 90% deflated, I had been using one lung for more than 12 hours. They took me back into the operating room to put a chest tube in. I was scared. They turned off the tube machine less than 24 hours later because I was having another one. I had the tube in and machine on for about three days. My lung was water-sealed and I am doing just fine!

While I was in the hospital, they did a genetic test and I was confirmed for vEDS. Now I knew why I bruised so easily. Doctors referred me to a cardiovascular doctor to check my heart and some arteries. I see him once a year and everything turns out good!

The following March, I had bad swelling in my left foot. I am a hairstylist so I thought I was just standing and on my feet too much. I talked to my foot doctor, we did an MRI; I had a type 2 rupture in the main tendon of my foot. I had tendon reconstructive surgery a month later. I was on a knee scooter for about a month, and I still cut hair just using one leg. It was kinda fun rolling around. Two months later I was walking again! I do have osteoarthritis now in that foot but it doesn’t stop me. Around that November I started having problems in my right eye. I thought I needed a new prescription. That wasn’t the case; my retina had detached and I had to have emergency eye surgery. I was close to losing all central vision in that eye. I was scared, I didn’t want eye surgery, but it wasn’t has bad as I thought it would be. I now have a buckle around my eye and see just fine! I see my retina specialist once a year now just to make sure everything is just fine.

I am going on two years with no major problems. Living with vEDS is hard at times. I have a pretty low immune system so I can get sick pretty quickly. I do take longer to heal than most people. VEDS does not stop me from living life. I do have to be careful though. I do have good and bad days, but who doesn’t? All the scary stuff that has happened to me only makes me stronger! I hope and pray that one day we find a cure for EDS. We zebras can do anything and we are never alone!


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