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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 have von Willebrands disease. I really don’t know much about it. I was told its a relatively minor case but that’sall i know. I don’t know what to expect with this disease and have a lot of body pain and headaches. I’m not sure if any of this is from vwd or if it’smy other conditions.
I have VWD and have always been told it’s a Factor VIII deficiency.
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 would strongly discourage trying to push through a bleed and not infuse. Especially if it is in any major joint. You will definitely pay for it when you get older and you develop severe arthritis… 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.
I don't have hep-c but know of some people that does or did. They now have treatment for it.
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 am sure it depends on what prescription coverage you have, but if for example you use CVS, you could ship your child’s meds and supplies to a CVS pharmacy in the area, and your child could pick it… read more
Has anyone have prolonged menstrual cycles associated with excessive bleeding and been diagnosed with von willebrand disease
My whole life I have had horrible cycles! They last anywhere from 12- 20 days at a time. And they were every 3 weeks when I was younger. Now I’m in menapause(53 yrs old) and I only do it every 3 mos… read more
Yes, I’m severe fXI and my fatigue is a daily thing but it’s made worse from the cold. Best thing is to take more time for yourself and caffeine aha
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
