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Symptoms I didn't expect? I've seen most everything our bleeding disorders can throw at us from birth to death, including joint destruction and viral contamination of the blood supply with tragic… read more
Of course ice is one of our long-standing tools, though I find it difficult to keep attached on such surfaces. Fifty years ago I was experimented on with porcine (pig) factor at University of Michigan… 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
Has anyone who is a known hemophilia carrier with 50% factor levels had surgery.
My sister is due to have a knee replacement. What was your experience and what did you have to do pre surgery and post op?
Please share your experiences. Thanks
Your sister should coordinate her care with surgeon and Hemophilia Treatment Center closest to her. It may be wise to consider factor replacement therapy or at very leat Stimate.
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.
I posted on this forum that I had both knees replaced. The first one 20 years ago and the second one 5years ago. It was the second one that developed problems. The lower section worked loose. Was… 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.
I'm a 50 year old with Hemaphilia A and I'm in the same situation and now it's getting worse with these drug shortages I'm having to struggle even to be able to get my pain meds filled
I'm with you on that ,sometimes,I get looked at like being abused or drug abuse and I dont
I bruise extremely easy with my May-Hegglin. Many times I have no clue what even caused the bruise. I like to wear skirts, dresses and shorts, but lately I dread wearing them because of my bruises and the reaction I get from others. I know I shouldn't care, but I don't want people to think I am abused either.
Be honest with people about your condition and how it causes bruising, often without you knowing the cause.
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