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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.
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
I've been reading a lot about the benefits of medical marijuana with people with hemophilia. Can anyone give me any insight
Thanks !!
I've been reading a lot about the benefits of medical marijuana with people with hemophilia. Can anyone give me any insight
Besides occasionally eating I take a daily multi-vitamin/mineral supplement as others mentioned. Also supplements like Types 1, 2 & 3 collagen for bones, joints and cartilage, L-Carnitine amino acid… 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
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 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
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 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
