It was extremely confusing for all of us. I have no family history and spontaneously developed it. As I received this question in my inbox, I was experiencing a nosebleed. This is my 4th one this week and is so frustrating. They always come from my nose and mouth at the same time and can last for hours at a time. I am still trying to learn more myself. I was diagnosed about 6 years ago but have obviously had it for many years prior.

I encouraged my siblings to read up on Von Willebrands and we talked about symptoms to be aware of. We discussed testing for family members. Our genetic component is strong in our family so testing the grandchildren is something well be doing. My doctor agreed.

My family didn’t know what to do. When we found out I had Vin Willebrand not many cases were around. So they did not know what to do. I had a great Dr that walked through it with us.

Do you get profalactic treatment at home? Do you have an HTC in your area? With those type of bleeds I would assume that you should be using factor or dvadp if you have Von Willebrands or lysteda an antifibrolinic.

Supporting me 100%