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)

Virtual Meeting:
Wednesday, December 18, 2024

6:00 PM – 7:00 PM Eastern Time

This meeting will be virtual, using Zoom. Please use the link below to join the meeting. 

https://us02web.zoom.us/j/86556800240?pwd=JToQpEy59lQndzmSDtjt3JKBOefQUf.1

Meeting ID: 865 5680 0240
Passcode: 010797

Meeting Location

Virtual meeting, using Zoom.

Social Media

Join the Pittsburgh support group’s Facebook group to connect online.

Topic: SAA Holiday Virtual Party

Please join us and the Spondylitis Association of America for a virtual holiday party.

Please RSVP to PittsburghSAAGroup@gmail.com!

Leadership

Calendar

DateTopicLocation
Monday, September 23, 2024Mental & Emotional WellnessVirtual Meeting
Tuesday – October 15, 2024Sleep & SpAVirtual Meeting
Saturday, November 23, 2024 Complications from SpAHybrid Meeting
No Meeting In December  
Monday, January 27, 2025 Pain and Fatigue in SpAVirtual Meeting
Monday, February 24, 2025Navigating Physical Limitations w/ Occupational TherapyVirtual Meeting
Monday, March 24, 2025Trying to Have a Baby? Things to Keep in MindVirtual Meeting
Saturday, April 26, 2025Wrap-up: EmploymentHybrid Meeting
   

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