Wow! Her story is heart wrenching. I’m waiting on my first appointment with a geneticist and hoping to be tested for Vascular ehlers. I’ve not had the exact problems but I’ve lived the scary stuff and none of the drs were searching for answers to my issues. So I’ve had to do all of the internet searches I can. My veins are so bad I had to have a port put in. I woke up during sedation because my veins kept bursting from the needle. It’s scary and if I hadn’t started looking for answers on my own I don’t think I would have figured out how to get this taken care of. I live in a medium size town of 33,0000 people. But am 37 miles from Dallas Tx
My daughter Amy just turned 31 when she had a bilateral vertebral artery dissection six years ago. She was in a coma on life support for a week in ICU. We also live in Ontario. Her ICU doctor was consulting with specialists from Toronto because they couldn’t figure out why this happened to someone so young and healthy. We found out from her autopsy that she had VEDS. Her MRI showed she had had 18 strokes in her brain and the doctor could tell that she had gone blind. Her sister won’t get tested because if she does have it she doesn’t want to wake up every day wondering if this is the day something happens to her. She has no physical characteristics of VEDS and neither does her father or me. Amy did have the signs. Big eyes, thin lips, transparent skin when she was little, slept with her eyes partially open and early varicose veins in her leg. We had never heard of VEDS before her autopsy. It’s terrible what you have gone through. And like you say worrying about what’s going to happen next. I guess that’s one good thing Amy didn’t have to go through. I wish you well and hope your medication continues to work for you. I can’t imagine what you are going through🩷🩷
