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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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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

Diagnosed and no answers

Started by Perth Mum in General. Last reply by Perth Mum 4 hours ago. 15 Replies

I have always had chronic anaemia ever since I was a kid. I was having regular iron injections done weekly for years to to get my iron count up but it never got up far enough. The iron tablets never worked and my body just wouldn't absorb the iron…Continue

Hey guys some advice needed.

Started by Ashmac in General. Last reply by Nellie 6 hours ago. 2 Replies

Hello there my name is ashley and I'm new to the group. My son has been diagnosed with vwd. At his first appointment on Wednesday it was a fair bit to take in. They said he is borderline between type 1 and 2 so just waiting on the results of the…Continue

Telemedicine Patient Education

Started by Ben Munoz in General 22 hours ago. 0 Replies

Hi, everyone.  Dr. Joan Leafman from AT Still medical school in Arizona asks to help spread the word about some research she is conducting.  The survey is about Telemedicine Sessions for Patient Education.   If you are interested the link is here …Continue

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 Aug 25. 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

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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

Perth Mum replied to Perth Mum's discussion Diagnosed and no answers
"Hi Di. My appointment has been pushed back to the 28th of October!!!!!!!!!!!!!! I am extremely…"
4 hours ago
di replied to Perth Mum's discussion Diagnosed and no answers
"Hi Perth Mum, I was wondering how things went with your new Haematologist? Our previous…"
4 hours ago

Moderator
dkel9307 commented on onemom's blog post Does anyone get sick when they bleed?
"All the very best onemom Please let us know how you go. Kind regards, David"
5 hours ago

Moderator
dkel9307 left a comment for Iansmom
"Hi, Iansmom!  Welcome to our VWD community!  I am happy to help you get…"
5 hours ago
Nellie replied to Ashmac's discussion Hey guys some advice needed.
"Hello Ashley, Yes IV DDAVP quite commonly causes headaches and facial flushing. The test is being…"
6 hours ago
Michele Brazelton commented on onemom's blog post Does anyone get sick when they bleed?
"Oh and I wanted to say I don't suggest ddavp you should talk to your hemotologist and they…"
9 hours ago
Michele Brazelton commented on onemom's blog post Does anyone get sick when they bleed?
"Have you had her checked for Iron anemia? That is what makes me sick when I bleed and can persist…"
9 hours ago
Michele Brazelton replied to Ashmac's discussion Hey guys some advice needed.
"I can't spell but the drug is ddavp should be no side affects and I am listed as a type 3 that…"
9 hours ago

Top Content 

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

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

Posted by Leana on August 5, 2014

2 Type 3 vwd

Type 3 vwd

Posted by Gareth on August 22, 2014

3 Does anyone get sick when they bleed?

Does anyone get sick when they bleed?

Added by onemom on August 29, 2014

 
 
 

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Blog Posts

Does anyone get sick when they bleed?

Posted by onemom on August 29, 2014 at 1:05am 9 Comments

My daughter age 14 becomes ill with some kind of virus or another every time she bleeds.  After tons of allergy and immunology tests, a ct scan of her lungs, vaccines vitamins, everything looks normal.  Her pediatrician fell that it is probably…

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