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Von Willebrand Disease (VWD) - Online Support Group

Support: give as good as you get!

#1

Here at Ben’s Friends, we live by “To get support, give support!”. When you’ve got a rare disease or chronic condition, life can be tough, as if it’s not tough enough already! We know: most of us here have at least one of those rare diseases or conditions ourselves.

We don’t dispense medical advice on your Ben’s Friends community. We’re all about support. How to get your head around this thing. How to cope. How to manage life with our rare condition. Along the way, we do share plenty of medical experiences and opinions, but support is the name of our game. YOU are the community, and we hope that support will become the name of your game as well.

New? Just joined us? Feeling lost, clueless and useless? You can give support too! How about responding with a something like “That’s an interesting thought. I’m going to try to looking at it that way.” That was easy! You’ve made another person feel useful and valued. You can feel good about that. A few words, a whole lot of support. And who knows, maybe their bit of wisdom will make a difference to you. Bonus!

OK, so you’re thinking, “How can I give support when I’m a hot mess myself? Well, it’s kind of funny how that works. Offering a quick, kind word, even if it’s just “Yes, I know, I’m having a rough time with that too” can really help, because it relieves that feeling of isolation for both of you. And isolation is one of the most difficult parts of having a rare disease or condition, isn’t it? Tell us about it.

See you on your community soon.

Your Ben’s Friends Moderators

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You’ll be in like a dirty shirt.