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

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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.

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Specific doctor or hospital names in a positive context are welcome.
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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 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

DO YOU SHOP ONLINE, ESPECIALLY AT AMAZON? YOUR USUAL PURCHASES CAN HELP BEN'S FRIENDS AT NO COST TO YOU!

Started by Scott Orn in General on Monday. 0 Replies

Amazon is running a new promotion for Amazon Smile, their program that gives money back to Non Profits. For instance, BensFriends.org (my nonprofit) received $52 from Amazon Smile our 1st month…Continue

Type 3 vwd

Started by Gareth in General. Last reply by dkel9307 on Saturday. 6 Replies

Hi everyone my 1 year old son has just been diagnosed with type 3 von willebrands disease and I was wondering if many other people have this type of vwd and there experiences of having a child with the disorder thanks

Anyone have a child that fights taking their Stimate?

Started by tresmathews in General. Last reply by Nellie on Friday. 4 Replies

My daughter is 8 and any time we have to give her stimate it is like world war III trying to get her to take it. She hates it being put up her nose. I have tried allowing her to give it to herself but the dose goes into the air instead of her nose.…Continue

Hemophilia Walk 2014

Started by BondGirl007 in General. Last reply by BondGirl007 on Friday. 2 Replies

Walk day is September 28, 2014.I am a team captain for the Central Ohio Hemophilia Walk for the 3rd year in a row now. Our team fundraising goal is $1,500 this year. All proceeds go to the Central Ohio Hemophilia Chapter & benefit patients and…Continue

Tags: Walk

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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
Ben Munoz posted a blog post

Ben's Friends Monthly Newsletter - August 2014 Issue

Just the Stats: Communities: 35 Friends: 42,000+ In this issueFeatured…See More
yesterday
Scott Orn posted a discussion
Monday

Moderator
dkel9307 left a comment for HayleyMoore
"Happy Birthday, Hayley!  My wish for you is that the year ahead is your…"
Monday

Moderator
dkel9307 replied to Gareth's discussion Type 3 vwd
"I feel for you, Gareth. I have other rare diseases, but not VWD - I just help facilitate this and…"
Saturday
Gareth replied to Gareth's discussion Type 3 vwd
"Thanks for all your replies! He is a typical little boy will not sit still for 2 mins always on the…"
Saturday
VWD III MAMA liked Gareth's discussion Type 3 vwd
Saturday
VWD III MAMA replied to Gareth's discussion Type 3 vwd
"My 4 year old daughter has type 3. Suspected at 4 months old, officially diagnosed at 6 months old,…"
Saturday
Nellie replied to tresmathews's discussion Anyone have a child that fights taking their Stimate?
"I do respect deadpickles response, as a type 3 at points I have been reluctant(as a girl) of…"
Friday

Top Content 

1 Hi! I'm new :)

Hi! I'm new :)

Posted by Pandamandabere on July 29, 2014

2 Hello...I'm new to the group!

Hello...I'm new to the group!

Posted by Leana on August 5, 2014

3 Dark Circles

Dark Circles

Posted by KaylaJo on July 31, 2014

 
 
 

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"To Know the Joy of Giving"

Blog Posts

Ben's Friends Monthly Newsletter - August 2014 Issue

Posted by Ben Munoz on August 26, 2014 at 9:15am 0 Comments

Just the Stats:

Communities: 35

Friends: 42,000+




In this issue…

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