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I Have Von Willebrand

A MyHemophiliaTeam Member asked a question πŸ’­
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

February 25, 2019
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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:

- Types of VWD: There are three types
- Type 1: Low levels of VWF, but the protein functions normally.
- Type 2: VWF is Show Full Answer

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:

- Types of VWD: There are three types:
- Type 1: Low levels of VWF, but the protein functions normally.
- Type 2: VWF is present but doesn't work properly.
- Type 3: Very low or no VWF, leading to severe bleeding issues.

- Symptoms:
- Frequent nosebleeds lasting at least 10 minutes
- Excessive bleeding after surgeries, injuries, cuts, or dental work
- Anemia due to iron deficiency
- Large bruises that form bumps under the skin
- Heavy menstrual bleeding in females

- Diagnosis:
- Blood tests such as complete blood count (CBC), prothrombin time (PT), and activated partial thromboplastin time (APTT)
- Specific tests to measure VWF levels and activity, including the ristocetin cofactor test

- Treatment:
- Desmopressin (DDAVP) to help the body make more VWF
- Replacement therapy with clotting factors made in a lab

If you have any specific questions or need more detailed information, feel free to ask!

July 28
A MyHemophiliaTeam Member

Yes. And they just forced me to find a pain management doctor, even tho I’ve been to two pain programs. The rest, ice, compression, elevation. I used light compression socks around the house like 8-12mmhm and gym socks at like 22mmhm. The lager number the tighter the compression. Get larger pro ice packs, I have 4 in the freezer at all times. Best to take pills on schedule and before pain ramps up. Chasing the pain is the worst. Pool therapy in a warm pool.

October 5, 2022
A MyHemophiliaTeam Member

I use a lot of pepperment oild and jajoba oild mixed for joint pain that helps

March 11, 2020
A MyHemophiliaTeam Member

Yes 😣 terrible for many years. I'm sorry you are hurting. 😣

April 29, 2019
A MyHemophiliaTeam Member

I have chronic pain in both replacement knees. I have 6 pins in my ankle, chronic pain there too.

March 16, 2019

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