Dear Friends and Family of LivingWithVWD,

As you well know, living with VWD can be very challenging not only for you but to your families as well. This organization was built with a view to helping you and your families to live up to this challenge by linking you up with people who share similar experiences and have succeeded in maintaining a positive outlook!

Explore more how our community had helped members face the…

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I’m the co-founder of this site and help run a group called Ben’s Friends (www.BensFriends.org) that builds patient support networks for people with rare conditions. I do this cause I love it. I’ve met so many wonderful friends on this journey.

It all started when my buddy, Ben Munoz, had a stroke caused by a rare condition called AVM. Ben survived but during recovery he couldn’t find a support group…so he started one called…

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LivingWithVWD Members, Friends and Family,

As we begin a brand new year, envigorated with greater joy and compassion, we renewed our greater commitments to our community. BensFriends grew tremendously in the past three years, and we want to take this moment both to thank you and to make a promise to continue fulfill our mission: to ensure that everyone in the world with a rare disease has a safe place to go and connect with others like…

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LivingwithVWD Members, Friends and Family,

We hope this message finds you well with high spirits and inner joy. We’re happy to inform you that our Von Willebrand’s Disease community continuously been growing. And as always, we’re here to give strength and support.

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IN THIS…

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Had a good weekend. Attended a VWD Women's Retreat held by H.O.E.P. over the weekend. Met people and families with VWD. Also learned a lot! Hope to keep attending to these wonderful events and gatherings. :)

Hi Everyone,

 

I was astounded yesterday when I picked up my Amicar Rx-

$230.00 per month.  I think we need to star getting in touch with our

Congress People.

 

I can't afford this!

 

Dianne

Coz there are so many things not to like, right? But I know for me, if I only focused on the bad things, I'd probably be depressed most of the time. So here are some things I like:



I know how my body works to a greater extent than most other people. Specifically, how blood works, and whats normal. And most people don't. Hey, a lot of medical professionals don't (I'm sure you've all had that experience!). And that can only be a good thing. I'm sure the day will come I have serious,… Continue

So i'm a sixteen year old kid with Von Willebrand' disease. I've never really accepted my bleeding disorder. I kinda like to pretend it isn't there but the reality is it. I mean I honestly I don't like to acknowledged my bleeding disorder. But never in life have I felt like such a disease it just goes to show that people are scared of the word disease. I mean I don't like to share the point that i have VWD with others because they immediately get scared thinking I can give them this mysterious… Continue

My daughter is 12 in Jr high and dealing with VWD

I have been experiencing all sorts of trouble with the school

District Where she attends.recently a classmate thought it would

be amusing to say my daughter is a slut that takes

Birthcontrol,which they found out by the nurses aids that happened to be

Classmates.my daughter cryed for days And rumors began to get

even bigger she was so stressed all she could say

was mom there not lieing I am on the pill it's… Continue

Hello:

 

I'm a vWD Type three male with chronic HCV and am on a transplant list. Lots of complications due to the constellation of symptoms from HCV, Cirrhosis and Server vWD. Anyone else have similar situation or experience?

 

Thanks!

Mis primeras palabras son para saludar a cada uno de los que al igual que yo padecen la enfermedad. Me encantaría conocer otras experiencias de vida y así apoyarnos a la distancia mutuamente.Ingrid.

my amacar does work for me anymore and my spray doesn't help at all

Does anybody with Von Willebrand's Disease also have Waldenstrom's macroglobulinemia? If so, when were you diagnosed? What do you do for treatment etc? The reason I ask is because my father was born with Von Willebrand's Disease and when he was around 60 years old he was diagnosed with Waldenstrom's macroglobulinemia. Thanks.

I have a large number of people in my family with this disorder, they also have Ehlers Danlos syndrome. We have seen it mentioned that it is not related but so many people responded on an Ehlers Danlos page that they also had it. I just wnted to post this to ask if anyone else has this connection. Again Apraxia of speech also linked to Von Willebrand's disease. What other rare conditions do you also have with Von Willebrands?

We have some important information we are happy to announce!

As you all know we run support networks for people affected who have a…

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