# Looking Your Stories - How has this site benefited you?

**URL:** <https://forum.chiarisupport.org/t/looking-your-stories-how-has-this-site-benefited-you/14662>\
**Category:** General\
**Created:** [January 9, 2024, 1:55am UTC](https://forum.chiarisupport.org/t/looking-your-stories-how-has-this-site-benefited-you/14662 "2024-01-09T01:55:11Z")\
**Posts on this page:** 3\
**Page:** 1

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**Author:** ![ModSupport](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/modsupport/32/5595_2.png) [@ModSupport](https://forum.chiarisupport.org/u/ModSupport)\
**Post date:** [January 9, 2024, 1:55am UTC](https://forum.chiarisupport.org/t/looking-your-stories-how-has-this-site-benefited-you/14662/1 "2024-01-09T01:55:11Z")

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[@trust\_level\_0](https://forum.chiarisupport.org/groups/trust_level_0)

_Dear Chiari Support Member,_

_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 your 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_ [_bf.stories@bensfriends.org_](mailto:bf.stories@bensfriends.org)_._

 

_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._

Thank you,

Ben’s Friends Rare Disease Communities

> **[BensFriends.org](https://www.bensfriends.org)**
>
> Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition.

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<div class="post-metadata">

**Author:** ![ModSupport](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/modsupport/32/5595_2.png) [@ModSupport](https://forum.chiarisupport.org/u/ModSupport)\
**Post date:** [January 9, 2024, 1:55am UTC](https://forum.chiarisupport.org/t/looking-your-stories-how-has-this-site-benefited-you/14662/2 "2024-01-09T01:55:28Z")

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**Author:** ![b2wc](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/b2wc/32/3549_2.png) [@b2wc](https://forum.chiarisupport.org/u/b2wc)\
**Post date:** [December 18, 2024, 9:12am UTC](https://forum.chiarisupport.org/t/looking-your-stories-how-has-this-site-benefited-you/14662/4 "2024-12-18T09:12:08Z")

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I think Ben’s friend helped me a lot in the early year of my Chiari, l was so terrified and did not know how to deal with my condiyion as Chiarian, after reading through all of the information from people suffering like me, l didcussed with my health care teams confidently.

I decided to have decompresion and l was able to walk and do the normal things again.

A huge thank you sll who expressed their suffering snd this platgorm

Merry Christmas & Happy New Year