Phone Toll Free Number: (800) 777-8189
Phone Toll Free Number: (800) 777-8189
Pittsburgh
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Meetings offer education, encouragement, emotional support, and allow for open discussion about managing and living with spondyloarthritis.

Upcoming Meeting(s)

Saturday, January 25, 2020
2:00-4:00 pm

Meeting Location

  • Monroeville Library
    4000 Gateway Campus Blvd.
    Monroeville, PA 15146

Social Media

Join our social media channels:

Facebook: @spondylitis 

Twitter: @spondylitis 

Instagram: @spondylitis 

YouTube: Spondylitis

LinkedIn: Spondylitis Association of America

Topic: Roundtable Discussion

Leadership

About Pittsburgh's Support Group Co-Leaders

Sara Shaw

I was diagnosed with AS in May 2013 after seventeen years of unexplained pain and unanswered questions, and lots of doctors implying I must be mentally ill because there was no other answer. The toll of unexplained chronic pain is gut wrenching and exhausting. My pain worsened with each pregnancy and is a big part of why I stopped at two kiddos. When I finally made it to a rheumatologist, the correct tests had been performed prior. My rheumatologist told me on my first visit I had a disease called Ankylosing Spondylitis and that while I would always have challenges, we would face them together and come up with a treatment plan. That day changed my life forever. I now have a name for this awful disease, but I also have a community that understands as well.

I am a single mom to two beautiful kids who keep me busy. I enjoy writing, reading, exploring new places in Pittsburgh, and working on my graduate degree. When I am not busy with the kids or doing homework, you will find me out window shopping or at the gym. AS is this not-so-fun disease that we all deal with, but it does not define who we are. I want this group to be an open, safe place where all are welcome without judgement. I look forward to meeting you, discussing the latest AS research, and sharing our stories.

You can read more about me in an article about my journey I wrote for Spondylitis Plus.

Sarah Gustwiller

I can’t remember a time when my body didn’t have pain. At age 2 I had a bout of uveitis. At age 7 pain started in my hands. Then my knees. Then irritable bowel. Then my jaw. My doctors kept diagnosing my individual symptoms but didn’t see a connection. When I left my hometown for Ohio State (go Bucks!) I had to find new doctors. My new rheumatologist thought to put the pieces together, and asked to do a lower spine/SI x-ray. There were enough degenerative changes that I immediately had a diagnosis of Ankylosing Spondylitis at age 19. Finally, a name for what I was going through! I was both devastated and relieved at once. We tried many treatment options, but most either caused kidney or liver issues or didn’t work well enough, or I turned out to be allergic to them. So I controlled my inflammation with diet, stretching, and the occasional Aleve, for over 10 years. A broken foot a few years ago put me into such an intense flare-up that I had no choice but to start on a biologic. After a couple of failures, and the added diagnosis of Psoriatic Arthritis, we found one that is working very well for me.

My husband, Jason, and I live in a small town in the foothills of the Appalachians in rural northeast Ohio. We have a lovely daughter who has given us two beautiful grandchildren. We love to travel together as a family. I spend my time singing, playing clarinet/bass clarinet, crocheting, crafting, and working on our house.

I became interested in leading a support group because of the amazing connection I found with another spondy. She and I met on a Facebook AS support page, and eventually met in real life. We’ve been close friends now for years. She is the only person in my life who really understands what I go through because of this disease, and having that support in my life has been hugely beneficial. I want to share that support with others. I can’t wait to make some new spondy friends!

Want to Start a New Support Group?

We’d love to have you join our team of passionate volunteers leading our spondylitis educational support groups! Learn more about how to get started here, and reach out to programs@spondylitis.org