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
You absolutely need to contact the closest Hemophilia treatment center. I would not ever do oral surgery without the their involvement. I have had 3 surgeries all went well. I have Von Willebrands.
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 am always tired and have petechiae in random places, not to many, they are on my chest and legs. Should I worry?
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
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
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’m so sorry that seems like it would be miserable
Vonwilabrands runs in my family. From sever to moderate. So bleeding is something we are used to but past several years my grandmother has been throwing clots as well. It looks like something that may occur in older age. Her hematologist just said that she is unique which I don't think is really an answer. Her clotting factor fluctuates as well from 27% to normal. Has anyone else had any experience with this? I have asked around and googled but no real answers. Trying to find out before it… read more
I have VWD, but also have a condition called "Antiphospholipid antibodies" that creates clots in places like legs, lungs, and brain. You wouldn't think that with a bleeding disorder you could create a… read more
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
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