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.

Need a Doctor or Specialist?

Birthdays

There are no birthdays today

Join Ben's Friends

Need a Second Opinion?

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

Groups

ClinicalTrials.gov Studies

Loading… Loading feed

Please Be Kind & Use Appropriate Language

Let's Keep it Nice & Clean
1. No Spam
2. No Personal attacks
3. No Offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos)
4. No Profanity, sexual references and illegal activity subject matter in the Chat Room.   
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. There are many sites for discussing religion and politics. This is not one of them. Divisive posts about religion and politics will be deleted.
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

Son has really black eyes is tired and has pain. Some advice please.

Started by Ashmac in General. Last reply by Ashmac on Friday. 10 Replies

Hi there. My son who has type 2 vwd just recently diagnosed has been complaining of a sore ankle for months now on and off and now is complaining of shoulder pain too. He says sometimes it's unbearable and then other days nothing. And he has also…Continue

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

Started by BondGirl007 in General. Last reply by Johntheelder on Wednesday. 6 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

Pain Research News

Started by dkel9307 in General Oct 9. 0 Replies

Hi EveryoneOne of our great Moderators (Mads) on the Living With Erythromelalgia site came up with a great idea that we thought was worth sharing across the board.I know some of you are not chronically ill, or in chronic pain, but chances are you…Continue

Avoiding Scammers and Spammers

Started by dkel9307 in General Oct 8. 0 Replies

Hi EveryoneAt times, we have problems with scammers and spammers, and the problem is growing as our communities grow.Hence, I thought I would share a notice that Red Lawhern, Lead Moderator for our Trigeminal Neuralgia Network just posted to his…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!

The goal of this site is to help and provide support to people affected by Von Willebrand's Disease, along with the families and friends.

Here is how you can optimize your FREE membership.

  • Share your VWD story and experiences on the My Page tab
  • Use the forum section to ask questions
  • Keep others updated via the blog section

Links to medical products helpful for VWD (DDAVP, Humate P & Amicar):
http://www.livingwithvwd.org/forum/topics/helpful-links-to-medical

Disclaimer:

This site is not intended to diagnose, prescribe, or replace the service of your physician, but solely to provide peer-to-peer support and to enable you to make informed decisions about your health with the guidance of healthcare professionals.

Latest Activity


Moderator
dkel9307 left a comment for Ksharman777
"Hi, Ksharman777!  Welcome…"
4 hours ago
Scott Orn left a comment for Ksharman777
"Hi Ksharman -  Huge welcome to the community! This is a great place! One tip, if you have…"
14 hours ago
Ksharman777 is now a member of Von Willebrand's Disease (VWD) - Online Support Group
14 hours ago
SK and Debbie Margolin are now friends
19 hours ago

Moderator
dkel9307 left a comment for twiinkleyes
"Happy Birthday, twiinkleyes!  May the year ahead be your best-ever.  Kind…"
yesterday
Ashmac replied to Ashmac's discussion Son has really black eyes is tired and has pain. Some advice please.
"When you say factor. What does that kean and entail? X"
Friday
Ashmac replied to Ashmac's discussion Son has really black eyes is tired and has pain. Some advice please.
"Thank you so much for your replies. He had his blood sugar levels tested as 8 took him to the…"
Friday
Bleeder Girl replied to Ashmac's discussion Son has really black eyes is tired and has pain. Some advice please.
"If your son has type 2 VWD, DDAVP or Stimate is not indicated for his type of VWD.  Type 2…"
Friday

Top Content 

1 Son has really black eyes is tired and has pain. Some advice please.

Son has really black eyes is tired and has pain. Some advice please.

Posted by Ashmac on September 29, 2014

2 Von Williebrand Disease and Childbirthing: Is it Safe?

Von Williebrand Disease and Childbirthing: Is it Safe?

Posted by missgiggles on September 28, 2014

3 New Stimate

New Stimate

Posted by Brianna on September 21, 2014

 
 
 

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…

"To Know the Joy of Giving"

Blog Posts

My daughter just started on Stimate...

Posted by onemom on October 4, 2014 at 12:49pm 4 Comments

My 14 year old daughter started on Stimate on September 10, 2014...it has not been a silver bullet so far.  We are really glad to have it just to try it and see if it helps.  We finally got it through an insurance override for this medication it…

Continue

Events

Gift Store

About

© 2014   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service