Questions & Answers

Hello, I was wondering if anyone with hemophilia has had bariatric surgery or any Marjory surgery? I was wondering how the surgery went and if there were any complications? I am considering surgery . Even though I have a very mild form of hemophilia one surgeon said he wouldn't risk it and the other one said it's no big deal?. I was just looking for advice from others who has been through it and the out comes..

.Hi, My 17 yro. Severe A son, is determined to buy a motorcycle. He has written and explained a 3 page report to me and his dad the reasons why he should be allowed to get a motorcycle. To me, this just sounds like the craziest idea in the world.--No exceptions!---A no brainer. But trying to convince my son is a totally different argument
This would not happen right away, but probably within the next 6 to 8 mos
I am searching for help from the "older" more experienced people,-- who may… read more

My son is a moderate factor viii deficient hemophiliac. He was born in March and it was discovered before his scheduled circumcision and after it was discovered, they were not willing to proceed. Where we're from, circumcision is very common (our pediatrician says 80%+) but doctors with experience with hemophilia is few and far between. I was hoping to get some input from someone living with hemophilia and how you feel about this issue. We are able to travel to a facility more capable of… read more

Received SSI until age of 26 then income interfere with it since 2006 been replying use all my work credits and been turn down for SSI they stated my condition has improved how do I go about getting lawyer or help getting this back low income no health insurance has really caused my condition to worsen

Can Wilabrands runs in my family with levels around 27% with the exception of my uncle who had less than 1%. No one in my family, including myself, who have levels normally at 27% have had a decrease like this. On occasion our levels have risen. So I am a little out of my element. What does this mean and what could have caused it? I haven't gotten in touch with his HTC Dr yet but spoke to the nurse. Is there anything I should be concerned with and bring up with her also? Thank you

We are considering attending this conference and would like to know if other families found it helpful/ educational. We are a new hemophilia family with a 2 month old (severe A). We are hoping to learn as much as we can before beginning factor treatment with our son.

Vonwilabrands runs in my family. From sever to moderate. So bleeding is something we are used to but past several years my grandmother has been throwing clots as well. It looks like something that may occur in older age. Her hematologist just said that she is unique which I don't think is really an answer. Her clotting factor fluctuates as well from 27% to normal. Has anyone else had any experience with this? I have asked around and googled but no real answers. Trying to find out before it… read more

Over approximately the past 10 years, my dad, who has von Willebrand's disease type 2b, has had platelet counts at about 25-35,000. The normal low for platelet counts is about 150,000. This is dangerous because the hematologists are afraid to do any procedures (knee surgery) because of this. The only medication that he can take so far is Humate-P and they are afraid to give him that since the platelets will raise but not at the same rate or safe rate as the vW factor.

He has had bone marrow… read more

I live in Michigan, and we have Childrens Special Health, that covers hospitalizations, factor, and supplies, with no cap.
I'm looking to moving somewhere possibly warmer in the future, and I'm curious about coverage in other states. I'm a very special, and severe case, and want to be sure I'll get the coverage that would keep me healthy.
If you care to share, that would be amazing.