Quick Links
Resources
About MyHemophiliaTeam
Powered By
Not at all for me either.
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 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
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
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 been told that taking omega oil supplements could be very dangerous as I have Vonwillebrands. Has anyone else heard or been told this?
I was told by my daughters’ Hematologist that they couldn’t have anything with fish oil because it could thin their blood. Their bleeding disorder isn’t Vonwillebrands, but I would assume this would… read more
Hi, David. I have been at Cardeza Foundation at Thomas Jefferson for decades. Chris Ramsey
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.
Received SSI until age of 26 then income interfere with it since 2006 been replying use all my work credits and been turn down for SSI they stated my condition has improved how do I go about getting lawyer or help getting this back low income no health insurance has really caused my condition to worsen
SSI is for poor people, SSDI is for people too disabled to work. They both have income and asset requirements. Like you can have two cars or $10,000 in the bank etc. the hemo clinic found me a lawyer… read more
Continue with Facebook
Sign up with your email
Your privacy is our priority. By continuing, you accept our
Terms of use, and our
Health Data and
Privacy policies.