Our stories are important. Please share yours!

Ben's Friends is made possible by generous donors who help pay for the costs of maintaining our network. They share with us, and we would like to share your story with them. Post what Ben's Friends has meant to you!

In your post, we'd love to hear a bit about your Ben's Friends story: how you were welcomed, what the support of your peers did for you, how Ben's Friends has made a difference in your

life and your family's life, or how being here has changed how you cope with your rare disease. Or anything else you can think of!

It doesn’t have to be long. And if you’d rather share your story privately, send a PM to me, or to ModSupport (find them in the members section.) Would you rather do a video testimonial? Even better! Send a PM to ModSupport. They will tell you the easiest way to do one.

Your turn! What has Ben’s Friends meant to you?

It's meant alot to me just to see how many people are sharing the same illness with you, when I joined I was welcomed by everyone and I started receiving friend request immediately. I am really enjoying being in the group just to see how it is effecting everyone differently and some the same as mine. I am sorry when I don't reply or don't be in the group I have days that I am in so much pain I just don't feel like moving.

Hi all.

I joined Ben's Friends and then promptly forgot about it :( It happens sometimes when you're sick, sites joined, then you get hit with a big flare and....

I look forward to finding my place here. I can tell you that without a doubt, support by your peers is just as important as the medicines you take.