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Real members of MyHemophiliaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

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Do Any Of You With Vwd Have Extreme Fatigue,joint Pain And Burning?

A MyHemophiliaTeam Member asked a question 💭
Sheboygan, WI

I can't seem to get enough sleep anymore. Somedays my joints hurt so bad I can hardly move and I am experiencing a terrible burning sensation around different joints when I move them. The most recent one is next to certain areas along my spine. My VWD is mild but this all worries me since it is happening more frequently.

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A MyHemophiliaTeam Member

People with von Willebrand disease (VWD) can experience symptoms such as fatigue, joint pain, and burning sensations. Fatigue can be linked to anemia, which is common in bleeding disorders like VWD… read more

I Have Von Willebrand

A MyHemophiliaTeam Member asked a question 💭
Macomb, MI

Does anyone have chronic pain I have it in neck back hips knees and ankles already have had 1 total knee and 1 total hip replacement

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A MyHemophiliaTeam Member

Von Willebrand Disease (VWD) is a bleeding disorder caused by a deficiency or dysfunction of the von Willebrand factor (VWF), a protein that helps blood clot. Here are some key points about VWD:

-… read more

I Have Von Willebrands. I Have Spontaneous Bleeds Under The Skin. I Also Have Joint Pain. Do VWD Patients Bleed Into Their Joints?

A MyHemophiliaTeam Member asked a question 💭
Brooksville, FL
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A MyHemophiliaTeam Member

I’m so sorry that seems like it would be miserable

Elbow Pain - Older Haemophiliacs

A MyHemophiliaTeam Member asked a question 💭
Durban, ZA

Are there any older guys with haemophilia that are experiencing chronic pain in both elbows. Right hand small finger has pins and needles feeling?

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A MyHemophiliaTeam Member

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.

Do You Know Your Limit

A MyHemophiliaTeam Member asked a question 💭
Colton, OR

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

A MyHemophiliaTeam Member

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

The Benefits Of Medical Marijuana

A MyHemophiliaTeam Member asked a question 💭
Durham, NC

I've been reading a lot about the benefits of medical marijuana with people with hemophilia. Can anyone give me any insight

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A MyHemophiliaTeam Member

Thanks !!

Spontaneous Black And Blues

A MyHemophiliaTeam Member asked a question 💭
Florida, NY

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?

A MyHemophiliaTeam Member

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.

Are There Ways To Lessen Fatigue That Comes With Von Willebrand Disease?

A MyHemophiliaTeam Member asked a question 💭
Hamburg, PA

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?

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A MyHemophiliaTeam Member

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

If Possible, Have Your Child Attend A Hemophilia Summer Camp To Meet Others With Our Condition, Learn Basic Facts And Build Community..

A MyHemophiliaTeam Member asked a question 💭
Williamston, MI

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.

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Has Anyone Been Told They Have Microbleeding In The Joints?

A MyHemophiliaTeam Member asked a question 💭
Pennsylvania Furnace, PA
A MyHemophiliaTeam Member

I switched to an extended 1/2 life Factor VIII product for prophylaxis and that seemed to eliminate ankle microbleeds.