Do you ever push yourself through a bleeding episode without infusing I do and it's actually not that bad once the bleeding has calmed down and gone away I hate needles is there any advise for this

I can't seem to get enough sleep anymore. Somedays my joints hurt so bad I can hardly move and I am experiencing a terrible burning sensation around different joints when I move them. The most recent one is next to certain areas along my spine. My VWD is mild but this all worries me since it is happening more frequently.

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

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.

I am curious, my husband has O negative blood and his friend also has negative blood. These are the only 2 hemophiliacs I know. I was wondering if there is a correlation with negative blood and hemophilia? Also, my husband has a MTHFR mutation, which makes his body less able to detox, among other things. I do not know about his friend’s status on this, but we found out through 23&me and genetic genie. Does anyone else know their status as far as blood type and/or MTHFR mutation, specifically 677… read more

For the last couple of months, I've experienced periodic extreme fatigue and I get petechiae (small red dotted rash) on my legs and chest. Are these typical symptoms any of you have experienced with your Von Willebrand Disease? What do you do about it?

I have factor IX hemophilia. I graduate college on May 12th, 2017 and have a job which will put me on tour with a nationally touring band. What are some tips if you have any that could help? How to get more factor when I'm on the road, contacts I should have, how to get more equipment (needles, syringes, etc) if I need more, etc.
I only take factor on demand, so I don't run out quickly. Don't really see this being an issue, but any information and tips will be helpful.

I have what appears to be blood vessels that break spontaneously in my fingers and feet. It burns for a while and then a black and blue mark appears. is this common in people with Von Willobrands Disorder?