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
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.
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 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
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 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've been reading a lot about the benefits of medical marijuana with people with hemophilia. Can anyone give me any insight
Thanks !!
Hi, my 3 year old son has moderate hemophilia, level 3.
He had a nasty bruise on his forehead that has swelled up to a golf ball size, and has rebled a little.
Apart from trans acid, is there anything any of you guys have used to stop the bleeding and support recovery?
We are very worried
Thanks so much
David
Is you son being treated by a Hemophilia Treatment Center(HTC)? You should check with the hematologists at the HTC nearest to you.