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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.

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

February 25, 2019
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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
MyHemophiliaTeam

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, 2024
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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