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.