Community Voices

Welcome to our virtual community! Start by browsing through the personal stories featured here.

We have organized these stories into two categories: Your Stories – stories sent to us at the Spondylitis Association of America – and selections from The Faces of Ankylosing Spondylitis project.

We’d love your story as well! Send it to us at Programs@spondylitis.org

Tell A Story with SAA Storytellers, Your Stories on Stage! Send Us Your Story Pitch!

Are you interested in being a part of SAA Storytellers, Your Stories on Stage?

SAA is always looking for those in the spondyloarthritis community to tell their story (patients, caregivers, medical personnel, and friends of the community – all are welcome!).

ByRose Bigham

Speaking at an FDA Public Meeting on Chronic Pain

This week I flew out to Baltimore (from Seattle! Looong flight!) to attend a public meeting at FDA…

ByM.J. Rowan

Face 2067

My experience with Rheumatologists wasn’t great. I remember one saying “we don’t know what causes it, 30% of people will have chronic RA, 30% of people will only have one flare, 30% of people will have it…

ByCarrie Bonin

Face 125

The first time I complained to my doctor about pain in the morning was around 16. His response was “Most people wake up with some pain in the morning. It’s completely normal”.

ByJen Johnson-Crosby

Face 2087

Jen Johnson-Crosby Many of you may or may not know about the medical issues that have been going on within my body. They have changed my life in so many ways. I am an LCH WARRIOR and…

ByGillian & Albert

Face 190

My name is Gillian and I have been living with Ankylosing Spondylitis all my life, one way or another. As a child, I was aware my dad wasn’t the same as other dads, he was bent right over,…

ByKayla Slack

Kayla Slack

I was first diagnosed with ankylosing spondylitis when I was 12 years old. I remember being outside at recess with terrible back pain that would have me almost in tears. I knew there was something wrong and…