I have Vascular Ehlers Danlos Syndrome. 

It is something I have said many times since my diagnosis almost two years ago. I have Vascular Ehlers Danlos Syndrome. 

Whether I am telling a new friend, a doctor, or an emergency responder, the responses I get are typical. “How do you spell that?” “What is that?” “Got it, Ehlers Danlos Syndrome. Shouldn’t be a problem.”

Explaining this condition has become an integral part of my life. I explain it to the emergency responders for my home and work. I explain it to every new doctor I see. Sometimes I reexplain it to my existing doctors. To the cardiologist who thinks a catheter ablation is “no big deal” with EDS. 

Can it be frustrating? 

Of course.  Because my form of Ehlers Danlos Syndrome, the vascular type, or VEDS, comes with severe complications. Life-threatening complications. It comes with a shortened life expectancy. It comes with a daily balancing act of risk management and quality of life assessment. It comes with a lot of hurt and confusion. With artery ruptures. With organ ruptures. With strokes and sudden death. 

And it comes without a solid management plan. It comes without a treatment. It comes without a cure. It comes without many doctors who know what it means. 

And no, I should not have a catheter ablation. It IS a big deal. 

VEDS is a silent killer. Only those who have been impacted by this disorder scream. It is left out of text books for medical students because it is a rare form of a disorder that is, as a whole, misunderstood and ignored. 

Coming to terms with this diagnosis was one of the hardest things I’ve had to do in my life. Helping the people who love me come to terms with the diagnosis is even harder. 

I live every day with the knowledge that it could be my last day. Could be my last week. 

I know that when my time comes, it will likely be fast, and it will likely be very painful.

How am I okay with this?

I am okay because I know that when my time comes, I have lived my life to the fullest. And the fullest to me doesn’t mean riskiest. It doesn’t mean that I have seen every inch of the world. It doesn’t mean I’ve raised a family. It doesn’t mean I’ve had every experience, or done everything I wanted to, just to be able to say I have done it.

It means I have appreciation for what I have done with my life. I have loved with my fullest ability. I have approached every obstacle and opportunity with everything I have to give. I can look back and truly say I am happy with my life. I am human, and I have made mistakes. I have taken from those mistakes everything I can learn. I know I will make more mistakes, and I will learn from those when I make them. 

I have not let VEDS take my appreciation for life. Life is a fragile thing, and I am grateful for each day I get to be here. I live in true happiness. In acceptance. And excitement for whatever future I get, for however long I get to experience it. 

And I know that no matter how frustrated I get, or how far I am pushed down, I will not lose that appreciation for what my life has been. 

5 thoughts on “Reflection

  1. Good luck on your journey. I also have VEDS; was diagnosed in 2010 and I’m not 44 years old. l had a rude awakening 2 months ago when I went to the ER with severe stomach pain. I was very clear about my disorder and yet they gave me a ct scan without contrast (which is useless) and then diagnosed me with acid reflux and sent me home with an pepcid prescription. Of course, I later found out that I didn’t have acid reflux, nor did I exhibit any symptoms of having acid reflux. What really happened was that I had an arterial rupture that must have been minor because it actually healed itself. I was pissed! They did the ct scan wrong so of course had no idea what was wrong with me and just made a guess…when my life was on the line! I was also very upset with myself. Both my father and brother died of VEDS due to medical F-ups and I didn’t learn from their deaths. I failed to protect myself. I failed to make sure the doctors knew what they were dealing with and treated me accordingly. Anyway, this is a long winded way of saying thank you for sharing your story and for educating others about your condition. I’m doing okay, btw. i learned I have two aneurysms and will have to quit my 18 year long career as a professional poker player because, apparently, poker is very bad for my vascular system. Oh well, it was good while it lasted!

    1. Translucent One April 28, 2019 — 2:54 pm

      Thank you, Joe! I am sorry to hear about your experience at the ER and about the loss of your brother and father. I hear so many horror stories from the ER and I think education at these facilities of vEDS is crucial to our survival. I wonder if you could speak to their medical director about vEDS so they have better education already if you come in again. Or give them Dr. Sherene Shalhub’s name at the University of Washington for them to call. I am glad you are doing okay now. How is poker bad for your vascular system?? That is awful to hear you have to quit that!!

      1. When I play poker, I feel extremely calm, but I’ve been taking my blood pressure while playing and it spikes up to over 150 and stay high for a very long time. This in combination with my aneurysms is deadly. My poker peers say I should get into poker coaching, and I might, but I decided to write a book first sharing how I use a scientific approach to analyzing and exploiting people on the poker table. I have a lot of material and my approach to poker is unique and would be extremely helpful to all players, but the writing process is kicking my ass. In the mean time, I’m experimenting with meds to help bring my blood pressure down under stress. and testing myself at the poker table once every other day. So far, it’s not working. When not playing poker, my blood pressure is good, but when playing, it’s still way too high.

      2. I’m not sure if I my reply went through, so I’ll try again. My normal everyday blood pressure is around 118/80, which is fine, but when playing a big hand in poker (despite feeling normal and perfectly calm) my BP spikes above 150 and stays high throughout my playing session. BP this high could worsen my aneurysms at best and at worst cause a rupture, which is what happened two months ago. I’ve experimented with medication and I’m practicing calming techniques on the table, but so far, I can hold my BP at around 140, but that’s still not good enough. I’m also an avid chess player and learned that my BP also spikes while playing speed chess, so I’ve been using this to help me with my experiments to lower my BP. I’d play a game or two of speed chess, measure my BP, then make a mental effort to calm myself. So far, the best way I’ve found to bring my BP back down is to take a walk (removing myself from the environment) and clear my mind.

        I still play poker but I keep my sessions down to about two hours. I usually spend almost all of my poker playing time reading a book or studying something but now I spend those two hours practicing calming exercises. When not playing poker, I’m working on writing a poker book and setting up a curriculum so I can start working as a poker coach. But given the choice, I’d rather just play poker. Even though I’ve been playing so long and I’m very studious, the game is still so fresh and open to new possibilities for me. The depth of it seems endless.

      3. Translucent One May 2, 2019 — 4:44 pm

        Wow! I’ve never considered what my BP is when I play games. I kinda don’t want to know! I hope the calming exercises can get your BP down to a level where you can continue to play.

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