Welcome to Living with Von Willebrand’s Disease Community!
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 inherited VWD: Type I, Type II and Type III. Platelet type VWD is also an inherited condition.
VWD Type I is more common than Types II and III, 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.
This site is a virtual community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.
How is Ben’s Friends Different from Social Media and Other Support Sites?
Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.
We’re interested in you as a person, and in your struggles as a rare disease patient. But we don’t want to know your name or where you live. We won’t even allow you to use your real name when you register for one of our communities. Because when it comes to medical things, anonymity is important in our googly universe. Your information is never shared, and your activity never tracked by adware.
When Ben’s Friends asks for the country and region you live in, that’s in case your fellow members can recommend local resources and help, and so everyone knows what kind of medical system there is where you live. That’s important when it comes to giving and getting support. Because we are all about support, and we’re all in this together..
Ben’s Friends: Safe and Supportive.
And anonymous to keep it that way.
Why create an account?
Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:
Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.
Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.
Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.
- Tranexamic Acid and birth controlby brookebrit on September 21, 2021
My daughter’s hematologist stated that it is not recommended to administer Tranexamic Acid while taking birth control pills. I have not been able to find what the possible side effects would be combining the two medications. Does anyone know the answer to this? 1 post – 1 participant Read full topic
- New address for your VWD communityby ModSupport on August 24, 2021
The web address for this page is now https://forum.livingwithvwd.org/ Bookmark that if you want to go directly to the Community forum. The old address, livingwithvwd.org/ , takes you to a new page which tells all about this community and Ben’s Friends. Check it out and let us know what you think! Reply to this message or email us anytime at firstname.lastname@example.org . Ben and the Ben’s […]
- Heads up! Happening soonby ModSupport on August 21, 2021
IMPORTANT NOTICE FOR OUR LivingWithVWD.org MEMBERS: Shortly, this community’s address will change temporarily toforum.LivingWithVWD.org . Please make a note of that address and go there when livingWithVWD.org doesn’t work for you. We are installing a landing page to which first time visitors will see before they join the community. Click here to see what we’ve done on our Eagle Syndrome […]
- How is a Ben’s Friends Community Different from Social Media and other Support Sites?by Bens_Friends on July 14, 2021
Are you wondering how a Ben’s Friends community is different from social media and other support sites? The Ben’s Friends community for this rare disease is interested in only one thing: you. You as a person, and you and your struggles as a patient. We’re not interested in knowing your name or where you live. We won’t even allow you to use your real name when you register for one of our […]
- BIG Covid Vaccine Questionsby Bens_Friends on March 15, 2021
New members arrive at Ben’s Friends with lots of questions, as well as a need for social support. That’s why we’re here. But these days the really big questions on peoples’ minds are about Covid vaccines. The advice we give here is friend-to-friend. It’s not evidence-based medical advice, even if many of us see ourselves as local experts in our own conditions. Opinions and advice about […]
- Come to a Free Webinar!by Bens_Friends on March 8, 2021
You’re invited to a free Webinar on March 10th Even though we don’t have a community for people whose lives have been impacted by Short Bowel Syndrome, we’re delighted that our Ben’s Friends Rare Diseases club at University of Toronto has invited us to join them at this event. Special guest at the Webinar will be Swapna Kakani, who is a vibrant and dynamic speaker. Swapna speaks not only […]
- Fwd: Ben’s has an APP for that!by Bens_Friends on January 28, 2021
@trust_level_0 1 post – 1 participant Read full topic
- Tendon issuesby prissrmax on January 28, 2021
Hi all, I never found a doctor that knows much about von Willebrand. The ones that even heard of it just mention its a blot clotting disorder. They don’t know about any symptoms and can never give me straight answers. I have major tendon issues with my right hand and arm. I’ve had multiple surges on my hand… the last one was basically exploratory to figure out pain and numbness issues. They […]
- Share your glimmer of light!by Bens_Friends on December 31, 2020
Trying to forget 2020? Oh yes, same here. But DON’T forget that there were some good things that happened to us this year too! Let’s put our heads together and come up with a list of small but good things to make us smile as 2020 passes – thank goodness – into history. What was your small but good thing this year? Do tell! It will do everyone good to see some points of light! Sharon from […]
- Always Here for You: Your Ben’s Friends Communityby Bens_Friends on December 22, 2020
It’s been a long, tiring, frustrating year. And the holiday season isn’t always the easiest time for people. If you are feeling lonely, or you just need to touch base and talk, please remember that your Ben’s Friends community is there for you. Although your community may be very quiet, the Ben’s Friends team will do our best to make sure that you will be able to make contact with someone […]