Your Stories - How Has “Living With PSC” Benefited You?

@trust_level_0 @ModSupport

Dear PSC Community,

For over 10 years, the Ben’s Friends online rare patient communities, run & moderated by rare patients themselves, have been a source of support for many of us, living with rare diseases.

But it’s not enough. We would like more people to know about this wonderful service.

To that effect, we are planning a social media campaign that will highlight the benefits of the Ben’s Friends online communities. We would like this to come directly from you, our members, to ensure the information is authentic and speaks directly to the reader.

So…we are inviting you to share with us how Living With PSC has benefited your life and how you cope with PSC. Any feedback on the platform, what makes it special, how it’s helped you, why you use it, and why others should as well.

Important note: our social media posts will be edited to avoid sharing any personal information, but will be 100% inspired by and representative of your stories.

If you are interested in contributing, please send your story as an email to

Note: by sending your story via email, you give Ben’s Friends consent to leverage some of its contents to create its social media posts, provided no patient privacy information is divulged.

Should you have any questions please respond to this post or private message me.


Mark Wilson, Moderator
Ben’s Friends

Mark, I have been keeping a journal since 2006 when I was dealing with UC.
When dx with PSC, I added those issues to my narrative.
Since then, it is now about 350 pages. The PSC part takes about 275 pages.

Might be a bit too much?


If you feel comfortable sharing it we can glean from it what is needed for the project. I’m sure I would find it of interest. Just email it in maybe as a pdf if you can. Thanks


Mark, I could not get it to you on your ben friends email. If you still have my email address, send me your personal one and I’ll try it that way.