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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

When to use Stimate?

Started by GoVikes in General. Last reply by KaylaJo on Tuesday. 4 Replies

I'm new to this board and fairly new to our daughter's diagnosis with Type I Von Willebrands last fall 2013. My daughter responded very well to DDAVP during her 6-hr challenge, but we were told she likely wouldn't need it unless she had an injury…Continue

VWD , the ADA, and how bad work can treet you?

Started by Michele Brazelton in General. Last reply by Michele Brazelton Apr 15. 6 Replies

I work at a BIG retail chain. I have worked there 7 years. It Used to. E that if I had a problem with bleeding management oked it in the system and all was well. Now they go through a 3rd party and I am gonna loose my job because the paper work…Continue

Newly diagnosed and looking for information.

Started by Bubby in General. Last reply by Bubby Apr 10. 5 Replies

Hello to all and thank you for welcoming me in to your community. I posted a question yesterday and was told to post it on the disscussion board. I had surgery in November that was not able to be completed due to severe bleeding. My surgeon sent me…Continue

kids playing sports with VWD

Started by Tanya Pollock (son has VWD) in General. Last reply by erin hurley Apr 8. 26 Replies

My son, 2 years old, was just diagnosed with VWD. The Dr said he won't b able to play conatct sports when he gets older. What do they mean by contact sports? We are a very sport oriented family, & are very bothered by this. Do any of you have…Continue

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Thank you for taking time to participate in our survey.  We are so grateful that more than 1000 of you responded! We are now working on analyzing the data. We'll let you know of the survey results soon.

Join the Global Genes Webinar on Health Insurance Issues

Find out how you can better evaluate what option is best suited for your individual needs. Learn about the different types of health insurance and emerging trends in benefit design and affordability for individuals with rare diseases.

Join the  FREE Navigating Insurance Issues Webinar on April 30, 2014 at 10am PST / 1pm EST / 6pm in UKRegister Now!

For more information about the Webinar, visit this link.

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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

KaylaJo replied to GoVikes's discussion When to use Stimate?
"I have VWD type 1 and stimate does nothing for me. I do take Ibuprophen but never Asprin.…"
Tuesday
Armando Abrero posted a blog post

Never give up.

Just wanted to share this inspiring video.Laugh often. Love a lot. Be strong. Never give up.…See More
Sunday
Bubby liked dancermom's profile
Apr 15
Michele Brazelton replied to Michele Brazelton's discussion VWD , the ADA, and how bad work can treet you?
"I think I may call the eeoc tomorrow."
Apr 15
Michele Brazelton replied to Michele Brazelton's discussion VWD , the ADA, and how bad work can treet you?
"I will look for a lawyer"
Apr 15

Moderator
dancermom replied to Michele Brazelton's discussion VWD , the ADA, and how bad work can treet you?
"It doesn't really seem like FMLA should come into play at all. This sounds like it should be…"
Apr 15
Michele Brazelton replied to Michele Brazelton's discussion VWD , the ADA, and how bad work can treet you?
"I was born at Mercy to. And I don't know how detailed as it never came but I have to fill out…"
Apr 15

Moderator
dancermom replied to Michele Brazelton's discussion VWD , the ADA, and how bad work can treet you?
"By the way, I lived in Des Moines for 3 years, had my first house on 43rd Street, and my kids were…"
Apr 15

Top Content 

1 When to use Stimate?

When to use Stimate?

Posted by GoVikes on April 7, 2014

2 Newly diagnosed and looking for information.

Newly diagnosed and looking for information.

Posted by Bubby on April 9, 2014

3 VWD , the ADA, and how bad work can treet you?

VWD , the ADA, and how bad work can treet you?

Posted by Michele Brazelton on April 15, 2014

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"To Know the Joy of Giving"

Blog Posts

Never give up.

Posted by Armando Abrero on April 20, 2014 at 4:16am 0 Comments

Just wanted to share this inspiring video.

Laugh often. Love a lot. Be strong. Never give up.…

Continue

March 2014 Community Newsletter

Posted by Ben Munoz on March 27, 2014 at 11:40am 0 Comments

Dear Living With VWD Family and Friends,

March 2014 is an exciting month for Ben’s Friends, as everything seems to fall into place! But before we share the good news, we invite you to participate in a brief survey on the positive…

Continue

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