I posted an in detail story about what’s happening, but in short. I need multiple surgeries and I am constantly being canceled by the oncologist for numerous reasons (not financial) for some ridiculous reasons such as dates, locations, etc. no referrals or rescheduling, no nothing, just cancels the surgery and surgeons eventually get annoyed and back out leaving me scavenging for other surgeons. Which most once they hear hemophilia refuse to do the surgery because apparently this is a common… 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.

Nowadays in countries with advanced medical care, many hemophiliacs never learn enough about our condition--about self-care and prevention of injury. It is critical that youngsters learn to avoid joint problems that can linger a life-time and cause chronic pain, plus the reasons for and importance of treatment. Not every young man needs to play tackle football or climb mountains. Encourage reading and development of positive social skills, things we all need in life.

Are there any older guys with haemophilia that are experiencing chronic pain in both elbows. Right hand small finger has pins and needles feeling?

Has anyone who is a known hemophilia carrier with 50% factor levels had surgery.
My sister is due to have a knee replacement. What was your experience and what did you have to do pre surgery and post op?
Please share your experiences. Thanks

I am looking for an oral surgeon familiar with Hemophilia in the Titusville/Orlando, Florida. I am a Hemophlia patient (Factor 11) def. and have a tendency to bleed alot.. My dentist said I would need a transfusion before, and one unit after the procedure. So we are talking about a two-three day hospital trip for me. So far, I have no recommendations for anyone close by. Not sure what to do, as the work needs to be done asap because of constant infections.

Any advise would be appreciated… read more

Has anyone have prolonged menstrual cycles associated with excessive bleeding and been diagnosed with von willebrand disease

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