Interview With Tyler “Living With Vascular EDS”

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In previous interviews we have touched on EDS hypermobile type, and a few times before we have talked to those living with Vascular Ehlers-Danlos Syndrome. Tyler lives with two types of EDS, hyper-mobile EDS and vascular EDS. Vascular EDS is the most severe form of EDS, you can find info on it here https://ehlers-danlos.com/eds-types/#vEDS Emergency info for those living with vEDS can be found here https://ehlers-danlos.com/emergency/

My name is Tyler, I’m from Charleston, South Carolina, USA. I’m 31, still a songwriter /musician (at home only to write music due to illness), photographer and had to leave my PA externship after graduation due to my illness.

I have Ehlers-Danlos types 3 (hypermobile EDS) and 4 (vascular EDS) POTS, PTSD and mild to moderate depression.

Before my disease I was your normal college kid in a band, using my photography skills to make extra money. I did volunteer work in the summer time, I was an all around normal guy.

My life started changing big at the age of 20. I began to experience joint pain, and lots of dislocations. By the age of 20 I had my first pulmonary embolism and followed by my first stroke. My doctors then knew I had some sort of vascular disease, have already had multiple joint surgeries.

The best day in the life of me now, and I know this sounds sappy, but bringing happiness to someone like myself. I know a few elderly people who don’t have family so I call them in the evening to hear about there day. Check in to see how they are, and make sure there door’s are locked. I try to find ways to do something nice from my apartment, it makes me happy.

The most challenging thing I face is a hard question, since I’m at the final stage of my illness, everything physical is hard. The hardest is keeping up mentally, it would be so easy to just give up, but I believe strongly that if there is life left in me then there is life left to give

I would tell others with my illness, there’s going to be days you don’t think you can live through, but there are others that are just as sick. These people may need your support as much as you need theirs. We need to pull together, let each other know that we’re here 24/7. We should try to live the good days as full as we can. Spread smiles and love everywhere you go when you can get out, we need more love to be shown, not just felt.

I would like others without my illnesses to know that yes I look for the most part normal, but I have diseased organs muscles and joints. Breathing hurts, moving hurts, please don’t have pity on me, have understanding and patience. Don’t leave me and give up on including me in your life because my body is unreliable, not my soul that you liked or loved. Don’t look past me, look inside me, I’m still here.

What I have learned is that I am stronger than I ever thought I was. People are unreliable and since my first cardiac arrest I tell almost everyone that I love them, there are hundreds of kinds of love. We need to share love more. I’ve been free to say how I feel about people early on, because I will never know if I’ll have the chance again.

The only thing I would add about my journey is that I’m ok with it being almost over, both myself and my body are worn out. I’m glad I found this special outlet as I near the finish line. My love to all my fellow spoonies, chronic illness fighters and fellow warriors. -Tyler

“Tyler thank you for sharing with us your journey so far. Tyler was an active and normal man, vEDS has drastically changed his life. He is a fighter, a warrior, and a friend. I admire his strength and resilience. Keep moving forward, you aren’t alone,  us Zebras have to stick together.” -Anna

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