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 been helpful to hear others' stories of symptoms, diagnoses (which are not easily come by), and treatments. I only just joined a few weeks ago and haven't yet posted much, but the welcome I received from at least two people was genuine and kind and most encouraging. This support group is essential and fills a sorely missing spot in the online community spectrum!

It has been a good thing to be able to communicate with people who are in the same boat....what life is like for them, problems and solutions, and just knowing that one is not alone out here............

I only found this site a few days ago and was immediately welcomed by two members. I started to develop CIDP in 2004 and this is the first time that I have ever been in contact with fellow sufferers. It is only in the last few years as the disease has progressed that other people (outside my family) have finally recognised that this is a seriously disabling disease and only this year that I have received treatment. I am so pleased to have found you all and hope to contribute something of value to those learning to cope with this condition.

I love this site it helps me feel less alone , thank you for letting me join. Hopefully I can help others as well as be helped.