only about 16,000 hemophiliacs in U.S.A. it is easy to understand why they don't. We just need to teach them. It is the teaching the doctors and nurses that bother me.
That my son will grow out of it. Or he needs to not be such a rough and tumble kid.
I have always allowed my boys to do what they want. We just have to watch the bruises more.
I've been told time and time again if I'd feed my children right they wouldn't have von willebrands disease. Also being told, well they don't look sick.
I enjoy the advice people give me it makes me understand where they are coming from at that moment.
I have heard it all myself and then the same stupid crap when I had children. They started trying to diagnose me when I was about 2yrs old and did not get a diffinative diagnosis until I was 18 1/2 of Von Willebrands. I have seen tons of changes, but one thing has remained consistent I can be in the ER with myself or one of my daughters and I am always the one instructing them. I have learned while most recognize Von Willebrands they don’t see it enough to stay up with treatment plans and meds. I can’t blame them they see so many other conditions regularly that those are just readily available to them. However I am also tired of being treated with skepticism in regards to signs and symptoms let alone allowable medications. Von Willebrands is difficult enough at times, but if you happen to be like me, diagnosed later left me open to a lot of injuries that would probably not occur now. I was a competive gymnast in high school and had we know sooner that would have been a restricted activity ( I had full on bleeds that were questioned by judges), but no one thought to pull me. It has left me with a life of fighting to prove injury and damage when these types of things were not documented like they are today. So I am always fighting with new medical providers until they actually see the damage on xrays and MRI’s. While I understand they have to verify all information an apology for their cynicism would go a long way to help rebuild trust.