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Thank you for sharing...I decided that day that this team would not be cutting on me...we have moved the surgery to a much bigger metropolis....they are only doctors..and I agree they feel above us… 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 am always tired and have petechiae in random places, not to many, they are on my chest and legs. Should I worry?
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 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
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
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.
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.
