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
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 have factor IX hemophilia. I graduate college on May 12th, 2017 and have a job which will put me on tour with a nationally touring band. What are some tips if you have any that could help? How to get more factor when I'm on the road, contacts I should have, how to get more equipment (needles, syringes, etc) if I need more, etc.
I only take factor on demand, so I don't run out quickly. Don't really see this being an issue, but any information and tips will be helpful.
I am also Factor IX deficient and do alot of traveling, including work related prior to recently retiring.
I always carried 2 doses with me and kept close contact with my base hemophilia doctor… read more
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
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
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?
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
Not that I’m aware of
My current situation is that I am 28 years old and am about to start medical school in a state outside my own (I am a Minnesota resident and will be going to Virginia for school). Since I am over 26, I can not enroll under my parents and I also will not be working and the school does not provide insurance. This leaves me with finding private healthcare coverage. Has anyone else dealt with a situation similar to this? I am afraid of the costs and the difficulty of living out-of-state which might… read more
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