Von Willebrand's Disease (VWD) - Online Support Group

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What is Von Willebrand's Disease?

Von Willebrand's Disease is a common hereditary coagulation abnormality caused by a qualitative or quantitative deficiency of von Willebrand factor (vWF). Von Willebrand factor (vWF) is a protein that is essential for platelet adhesion.

There are three forms of VWD: inherited, acquired and pseudo or platelet type. There are three types of inherited VWD: Type I, Type II and Type III. Platelet type VWD is also an inherited condition.

VWD Type I is more common than Types II and III, and those that have it are typically asymptomatic or may experience mild symptoms such as nosebleeds, although there may be severe symptoms in some cases.

Survey opportunity for patients diagnosed with VWD or their caregivers

Each qualifying respondent who completes this study will receive $50 for participating. In addition, Research Now will make a donation of $50 to Ben’s Friends for your participation. Your identity and information will be kept anonymous. To participate in the study, please copy and paste the following link into a new browser: http://www.interceptsurveys.net/Survey1752/?VID=410

Forum

Anyone stuck on completing the Research Now survey?

Started by Madere (dancermom) in General. Last reply by Madere (dancermom) Jun 29. 3 Replies

Hi, everyone, I am hearing from the good folks at Research now that a good number of you are midway through the survey. Thank you for participating. If you are stuck on something, please let us know, so we can help clarify. If those of you who are…Continue

Von Willebrand's Disease Insight Opportunity – Receive $50 for completing a Research Survey

Started by Madere (dancermom) in General. Last reply by Madere (dancermom) Jun 25. 3 Replies

Members, please read below. From time to time, Ben's Friends learns of opportunities that may aid in research efforts and may help develop new treatments for members on our communities. We may occasionally present these opportunities on the forum,…Continue

Medications to be avoided by people with VWD

Started by Nel in General. Last reply by Mini May 23. 2 Replies

The Canadian Haemophilia association is a good source of information on von Willebrands Disorder…Continue

Interesting article. Help comes from unexpected quarters - Possible new antivenom from one of the oldest surviving mammal families

Started by Nel in General. Last reply by Amsey1 May 10. 3 Replies

Pit viper venom is haemotoxic but opossums have a blood protein, the von Willebrand Factor (vWF), which improves the animal’s ability to neutralise the anti-coagulant effect of the venom. In the 1990s researchers isolated the peptide from the…Continue

Looking for women willing to discuss embarrassing issues

Started by Hopeful_Kitten in Recommend a Doctor, Therapist, or Clinic (Positive Review Only). Last reply by Aviator8 Apr 20. 8 Replies

I'm new to the forum scene here and hate to be so forward, but I've been dealing with some intense female issues that have demolished my quality of life for at least two weeks of every month for the last year and am looking for answers. I've placed…Continue

An interesting topic which members have been discussing on our FB page

Started by Nel in General Mar 5. 0 Replies

What are the chances of passing von Willebrand's disease on to my daughter?Reply by Suzanne DixonpediatricianThe condition you have, von Willebrand's disease, is an inherited disorder that alters the blood's ability to clot. It's usually inherited…Continue

Where are my fellow Type 3 Severe folks at???

Started by BondGirl007 in General. Last reply by Johntheelder Feb 24. 11 Replies

Hey all! :)Just checking in to see how many Type 3 vWd's are on this site???  I love meeting other severe peeps and sharing our horror stories! :)  Comment on this discussion if you are Type 3 <3Thanks,StacyContinue

Tags: III, vwd, 3, type

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Welcome to Living with VWD!

Please contact a moderator if you would like to volunteer on this community.

Latest Activity


Moderator
Johntheelder left a comment for Bri Decker
"Hi Bri, Welcome to the group. There is a women's issues group on this site that can help on…"
1 hour ago

Greeter
Elodie left a comment for Bri Decker
"Welcome Bri! Please feel free to start a discussion to ask questions or introduce yourself. It is…"
1 hour ago
Bri Decker is now a member of Von Willebrand's Disease (VWD) - Online Support Group
1 hour ago
onemom and Madere (dancermom) are now friends
Jun 29

Moderator
Madere (dancermom) replied to Madere (dancermom)'s discussion Anyone stuck on completing the Research Now survey?
"I will check on this for you, JKR, and will get back to you."
Jun 29
JKR replied to Madere (dancermom)'s discussion Anyone stuck on completing the Research Now survey?
"I tried to join in doing the research but I don't know why my application wasn't…"
Jun 29

Moderator
Madere (dancermom)'s blog post was featured

To better serve you, we will be closing Blogs shortly

It takes a lot of work to maintain our online communities. If we can streamline the effort, it…See More
Jun 28

Moderator
Madere (dancermom) posted a blog post

To better serve you, we will be closing Blogs shortly

It takes a lot of work to maintain our online communities. If we can streamline the effort, it…See More
Jun 28
carmen serrano posted a status
"Thank you for the add. we just found out Friday so still very confused at what it means for him.."
Jun 28

Moderator
Madere (dancermom) left a comment for carmen serrano
"Welcome, Carmen, to this supportive community. Post a discussion for support by clicking the…"
Jun 28
carmen serrano is now a member of Von Willebrand's Disease (VWD) - Online Support Group
Jun 28
onemom replied to Madere (dancermom)'s discussion Anyone stuck on completing the Research Now survey?
"I'm so glad that so many people are participating. Everyone should give it a go you don't…"
Jun 27
 
 
 

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Are You In Crisis?

First take a deep breath, then call the National Suicide Prevention Hotline immediately.  1-800-273-TALK for members in the United States.

For international members, please visit http://www.suicide.org/international-suicide-hotlines.html for the right phone numbers in your region.

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LivingWithVWD is a peer-to-peer network

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Blog Posts

To better serve you, we will be closing Blogs shortly

Posted by Madere (dancermom) on June 28, 2015 at 1:39pm 0 Comments

It takes a lot of work to maintain our online communities. If we can streamline the effort, it helps a lot. To better serve you, we will be closing the blog feature shortly. Please use the discussion forum in lieu of blogs. If…

Continue

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