Hello everyone. I’m a longtime Reddit lurker, I’ve commented maybe twice or more in my life and this is my first post. I recently joined this subreddit after my brother’s passing, and I wanted to share our story, for whatever it’s worth.
My brother was diagnosed with vEDS after his first complications at 23 years old, a subclavian artery aneurysm and a stroke. At the time, nobody knew. Doctors couldn’t understand what was happening. After two months in the ICU, a complicated surgery that placed stents in both subclavian arteries, and being put into an induced coma… they saved his life. Before this year, those were the hardest months of my life, trying to hold on for him, trying to bring him whatever small amount of light I could.
It wasn’t until a year later, after a genetic test, that we finally understood why all of this had happened. They found the genetic anomaly that confirmed vEDS, and we could begin some kind of treatment plan, though, as you all know, there is no real treatment. Only medication to help relieve the pressure on the cardiovascular system.
After rehabilitation, my brother was able to live a relatively normal life, with some lasting side effects from the stroke and surgery that affected his vision and blood flow to his arms. More than that, the experience changed him profoundly. He went from being someone quiet and reserved, someone who tried to go unnoticed, to someone who didn’t hesitate to show up for others, to ask for help, to give joy. He radiated light, kindness, and understanding in a way I hadn’t seen before.
Then, fast forward to the last weekend of March. He was brought to the hospital after complaining of chest pain, which eventually eased, but he was kept under observation for obvious reasons. The pain returned twice more while he was there, on two separate days. On March 31st, I got to see him for the last time, when he was rushed to the ICU because of that same chest pain.
When I arrived, I was so relieved to find him talking and cracking jokes. I stayed with him the whole day. My mind couldn’t go back to what had happened three years before, I genuinely believed he was going to be okay. He told me he felt fine. The doctors told us everything looked okay, even if his blood pressure was a little higher than I would have liked. I didn’t want to leave. I wanted to stay in case he felt scared or needed me. But he insisted he was okay, that I had been there long enough, that it was fine to go. So I did. I gave him a big hug, kissed him on the forehead, and told him I’d be back the next day as soon as visiting hours opened. Little did I know.
The next morning, April 1st, I woke up and texted him to see how he was doing. He replied: “Everything is okay, I’m probably getting out of here this afternoon 😄”. I was so happy reading that. I told him to keep me updated, then went to work. We kept texting throughout the morning. The last message I received from him was at 11:41 AM. At noon, the hospital called. Something had happened and we needed to come immediately. We did, but it was too late. Nothing could be done. An aortic dissection, and an ultrasound revealed that several other arteries had also been affected.
I don’t have the words to describe the void his passing has left in me. As I write this today, April 28th, his 27th birthday, almost a month has passed since he left and I miss him more than I can say.
I’ll never fully understand the struggle or the fear that you all carry. But I hope you know that there are people out there who love you, and that the fight to keep living everyday is worth it. He showed me that.
PS: My brother was the first member of our family to be diagnosed with vEDS.