Arthritis Patient Advisory Board Member Spotlight: Shanon McQuitty

The Arthritis Patient Advisory Board (APAB) is comprised of volunteer advocates with arthritis who bring personal experience and arthritis knowledge to research decision making at Arthritis Research Canada. By sharing their perspectives, APAB members ensure that the voices of people living with arthritis help shape the work we do.

One of these members is Shanon McQuitty, who has been part of APAB since 2014 and brings a deeply personal perspective shaped by years of learning about her own rheumatoid arthritis diagnosis. Shanon’s journey with arthritis has been guided by strong family support and the power of community.

Can you tell us a bit about yourself and your connection to arthritis?

I was diagnosed in the fall of 2011.  I was misdiagnosed for 7 years because I have flat feet, so that’s what my doctor focused on first and I was misdiagnosed with tendonitis. It got to the point where I would have to take some Tylenol to even get out of bed.

Three months prior to my diagnosis, my sister moved back from San Diego and she was offering care for someone with rheumatoid arthritis. She’s a licensed nurse, so she’s the one who gave me advice, like how I should keep crackers in my desk drawer so I could always take Tylenol with food.

The way I got the news broken to me by my doctor of 30 years was, “Well, it’s not cancer,”. I had finger and knee pain, and it was different than anything I had experienced before, so I went to the doctor and ran the bloodwork. It came back with a high rheumatoid arthritis factor.

The pain got so bad that I went to Vancouver General Hospital’s emergency room and saw the rheumatologist on call there. They confirmed I had rheumatoid arthritis and got me on Prednisone just to bridge me until my next rheumatology appointment.

What motivated you to join Arthritis Research Canada’s Patient Advisory Board?

My rheumatologist got me started on triple therapy, which was really hard on my body. I was getting resources together and learning about my disease on social media, and my sister accompanied me to all my appointments.

I found out about an event called Reaching Out with Arthritis Research (ROAR) online. It was all about accessing and getting care for arthritis. So, I went to the event and thought it was really good. I found out at the end that it was all put together by patients and thought that was fantastic.

I didn’t know much about Arthritis Research Canada at the time, but I saw they had sheets on the event tables if you were interested in becoming a part of this patient group, so I left my information. And that’s how it all started.

What does being part of the Arthritis Patient Advisory Board mean to you personally?

It’s very empowering. When you’re living with these diseases, you feel so defeated most of the time. It’s been such a good place to receive support and also pay it forward. Because research moves so fast in this space, you almost have to be online to keep up.

Why do you think patient perspectives are important in shaping arthritis research?

It’s about us. Nothing about us, without us, as the saying goes. That’s how I’ve approached APAB from the beginning. It felt so common sense to me. It’s surprising at the same time that many aspects of research don’t prioritize us.

Are you hopeful about arthritis research?

Yes, I’m hopeful for a cure or a way to reverse arthritis one day. There are so many things on the horizon that are happening. I think the next 10 years in arthritis research are going to be really incredible. I’ve heard about a way that you can grow your own cartilage for people who have osteoarthritis, and that’s huge. It would remove the need for people with osteoarthritis to have surgery. That’s not even my disease and I’m so excited about it.

I’m also excited about personalized treatment, whether it’s bloodwork or DNA, since the current method of hopping to different biologics and learning through trial and error isn’t the best.

What’s one thing you wish more people understood about living with arthritis?

Most people don’t understand the level of fatigue involved, along with the level of insomnia. It seems ironic, but we live with both. I don’t know how to describe it, and it’s not something people can see either.

Are you involved in any advocacy or community work outside of the Patient Advisory Board?

I started a rheumatoid arthritis support Facebook page to share what’s happening in arthritis research in the province and locally in the Lower Mainland.  I was one of the founding members of Patients in Education. I’ve been involved with organizations like SPOR and Evidence Alliance, and was also a health mentor at UBC. I really like working with trainees who are new to research work.  I also do arthritis continuing education work with the Arthritis Society. I was also involved with the Patient Engagement in Research (PEIRS) project. That was one of my proudest moments, because of its subject matter.

What are some things you like to do in your free time?

I am a knitter, and like photography, music, art, and current events and culture, I try to stay active when I can. I have a pool at my condo and I want to try chair yoga and maybe virtual reality (VR) tech in the future. If I can get my hands on a VR headset, I think that would be beneficial for me and will allow me to get more movement. Since I have such a love of music, I also enjoy going to concerts. Going to a concert, or other music events when I’m up for it, brings me so much joy.