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

WELCOME!!!

Welcome! You're not alone.

If your family has been affected by Von Willebrand's Disease (VWD), consider Von Willebrand's Disease (VWD) Support Network your second home.

NOW....GET STARTED:

1. Become a Member
2. Make Friends
3. Post to a Forum
4. Read or write a Blog
5. Join or Create a Group
6. Follow us on Twitter
7. Become a fan to our Facebook

Got some QUESTIONS? 
Check our FAQ PAGE.

Read More from our  First-Time-User Guide.

Concerned About Privacy

Since content and usernames are searchable on this site, you may protect your anonymity by creating a unique username.

To change username, click here. 

Need a Doctor or Specialist?

Birthdays

Join Ben's Friends

Disclaimer

All of the material provided on this site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings and any other material submitted on this site are for informational purposes only and are not meant to substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health and never disregard professional medical advice or delay in seeking it because of something you have read on this site. Ben’s Friends does not endorse any particular therapy, doctor or facility shared in this forum and always recommends consulting with your doctor before adopting any treatment mentioned on this site.

Community Moderators

Have a question, concern, or suggestion? Or would you like to volunteer?

Please send a private message to a moderator.

JohnTheElder
John
Nel
Alina

ClinicalTrials.gov Studies

Loading… Loading feed

Please Be Kind & Use Appropriate Language

Let's Keep it Nice & Clean
  1. Describe (share experiences), not Prescribe (suggest treatment for others).
  2. No spam.
  3. No personal attacks or defamatory posts.
  4. No offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos).
  5. No specific doctor or hospital name mentioned in a negative context, for legal reasons. Specific doctor or hospital names in a positive context are welcome.
  6. No sharing of members' posts to other sites without their express permission.
  7. No solicitations or promotions of goods or services. No fundraising without the permission of the moderators.
  8. No email addresses or phone numbers on the forum, please.
  9. We welcome people of any faith and no faith, but we ask that you not evangelize or attempt to impose your belief system on other members.
  10. Check your politics at the door, please.

Thanks for your cooperation.

Partners

BensFriends.org is proud to partner with a number of organizations to help our members in various areas, including legal, financial, research and medical. 

Know more about our PARTNERSvisit this link.

 

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 hereditary VWD: VWD Type I, VWD Type II and VWD III. Within the three inherited types of vWD there are various subtypes. Platelet type VWD is also an inherited condition.

VWD Type I is the most common type of the disorder 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.

There are various factors that affect the presentation and severity of symptoms of vWD such as blood type.

Forum

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

Frustrated Parent

Started by lisa in General. Last reply by suzee Feb 24. 11 Replies

My daughter was dignosted with VWD when she was 5 years old she is now 7.  She has always been full of life and energy.  Over the past 5/6 weeks she has not been herself.  It started with her not running around like a crazy kid. I put it off as her…Continue

Mobile App and E-Book Available!

Keep in touch with friends. Get support and information while on the go. DOWNLOAD the Ben's Friends iPhone App now!

Be inspired by the helpful tips and amazing stories of patients with rare diseases. Get the e-book "We're in This Together: Stories & Tips from Patients with Rare Diseases" HERE.

Welcome to Living with VWD!

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

Latest Activity


Moderator
dancermom left a comment for Bailey Elliott
"Welcome, Bailey, to this supportive community. Feel free to open a discussion to introduce yourself…"
Monday
Bailey Elliott is now a member of Von Willebrand's Disease (VWD) - Online Support Group
Monday
Mary posted a blog post

Learning

I was diagnosed in my sophmore year of high school. Becuase i was trying to focus on school i never…See More
Monday

Moderator
Johntheelder left a comment for Aviator8
"hello aviator8, Welcome to the group. More than a few of us have suffered from depression and the…"
Monday

Moderator
Johntheelder left a comment for Mary
"Welcome Mary, Ask a question or tell a story. There are people here with all forms of von…"
Monday
Scott Orn posted a blog post

Local Fundraiser for Ben's Friends

I wanted to share some good news from a local fundraiser we did last night in San Francisco. Some…See More
Sunday

Moderator
dancermom left a comment for Mary
"Welcome, Mary, to this supportive community. Feel free to open a discussion to introduce yourself…"
Mar 20
Profile IconMary, Jake's Mom and Aviator8 joined Von Willebrand's Disease (VWD) - Online Support Group
Mar 20
 
 
 

Help Us Help Others

We Need Your Help

4 Quick Ways You Can Help
1. Tell a friend or relative that we may have a community for them. Our communities are listed below this page.
2. Tell journalists and bloggers about our story and our mission.
3. Help us launch a new patient community for someone you know. Email:info@bensfriends.org.
4. Help our Google rankings by linking to BensFriends.org or any community from any web site you can.

Read more...

Bens Friends

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 information on where to call.

Help Ben's Friends

Like & Follow Us!

Follow Me on Pinterest

Give Us A Review

To Support LivingwithVWD.org, Click an Ad. Or Two.

Photos

Loading…

LivingWithVWD is a peer-to-peer network

To get support, give support.

Blog Posts

Learning

Posted by Mary on March 22, 2015 at 8:28pm 0 Comments

I was diagnosed in my sophmore year of high school. Becuase i was trying to focus on school i never really thought about the seriousness of this disease so im trying to learn more about it. Im thinking about getting a bracelet for it just incase… Continue

Events

Gift Store

About

© 2015   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service