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?
I have pins and needles in my small finger as well as the next. Xrays shows that I have a nerve caught in the elbow joint. Got used to it after an few years. Now I have Carpal tunnel syndrome as well.
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 use to have the same situation. Now I have them contact my hemotologist to set up a treatment plan together. Since I started this method. I haven't been rescheduled, denied, postponed, etc
What are the replacement to the factor 9 if it isn't available?!We have been suffering from the lack of factor 9 in Jordan since October 2022!
You can reach out to “save one life” or a manufacturer to get factor
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?
Sounds like joint bleeds. I have it in my hands and arms and knees. But that’s exactly what happens, the burning and bruising is common with vwd usually what feels like arthritis pain follows.
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.
I don't have hep-c but know of some people that does or did. They now have treatment for it.
I have von willebrand disease. A lot of days I feel very tired and like a bus hit me. I also have pain in my joints and bones when I feel fatigued. The only way I can explain it is feeling like I have the flu. Are there any ways or tips to lessen my fatigue so I don’t feel so ill?
I feel the same way. I find that making sure I drink enough water and keep moving as much as possible even though I don’t want to
I have severe arthritis in both of my ankles. I use, Celebrex and an AFO brace.
I have severe arthritis in my knee because of repeated bleeds and had a could have radioactive synovectomys which have just finished my knee off. On celecoxib, txa and 2000 daily benefix
Gene, is the cyst causing pain or irritation? If not it might be OK to leave it for now, cosmetic issues aside. Your doc might also be unacquainted with factor replacement therapy and be afraid of… read more