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
Interesting question but I don't believe there is any connection between RH factor and hereditary bleeding disorders. Like you, I am O-neg. but that only means we are universal blood donors (like… read more
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
I have Vonwillebrands so does my daughter who is pregnant but she also has a platelet disorder on top of the Von Willebrand's when I was pregnant my doctor said the Von Willebrand's gets better when you're pregnant but when my sister had both her babies she also has a platelet disorder on top of the von Willebrand's she almost died from bleeding I was told von Willebrand's and platelet disorder during pregnancy makes it worse my daughter's Dr doesn't seem to be worried about it but I am and I'm… read more
I have vwd with platelet and factor VIII ISSUES. I have two children and only had problems after the birth of second. I bled for a month afterwards until they gave me fVIII infusions. That seemed to… read more
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.
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've been reading a lot about the benefits of medical marijuana with people with hemophilia. Can anyone give me any insight
Thanks !!
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
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
My current situation is that I am 28 years old and am about to start medical school in a state outside my own (I am a Minnesota resident and will be going to Virginia for school). Since I am over 26, I can not enroll under my parents and I also will not be working and the school does not provide insurance. This leaves me with finding private healthcare coverage. Has anyone else dealt with a situation similar to this? I am afraid of the costs and the difficulty of living out-of-state which might… read more
Check for MarketPlace plans under the Affordable Care Act