Friday Feature: Getting to Know Jonni Sutton our Clinic Liaison for our New Clinic Partnership in Columbia, MO

On August 21st, the Myasthenia Gravis Association will begin our 5th clinic partnership with Dr. Vernita Hairston and Dr. Richard Barohn in Columbia, MO. We are excited to be working with Dr. Hairston and Dr. Barohn. Dr. Barohn was an integral part of our very first clinic at the University of Kansas in KC and we are thrilled to be working with him again. Clinic will be held on the 3rd Thursday morning of each month. We’re thrilled to introduce Jonni Sutton, our new Clinic Liaison for the University of Missouri myasthenia gravis clinic partnership. Jonni has been a tireless advocate, support group leader, and beacon of hope for MG patients throughout central Missouri. In this feature, Jonni shares her personal journey, insights, and the heart behind her new role with MGA.

Can you tell us a little about yourself and where you’re from?

I’m originally from Slater, Missouri, but my husband Lenny and I have called mid-Missouri home for a long time. We lived in Columbia until 2018, and now we live in Salisbury, where we’re raising our three amazing kids: Kaylee (almost 12), Brady (9), and Hunter (5). Life is definitely full, and being a mom is hands down my favorite job. I absolutely adore my kids, they keep me grounded and inspired every day.

I have a bachelor’s degree in psychology, and before my diagnosis, I was healthy and fully immersed in school and life. Everything changed during spring break of my junior year in college back in 2001, that’s when my MG journey began.

How did your journey with myasthenia gravis begin?

I hadn’t been feeling well for a while, just constantly exhausted. But I was pushing through it, working two jobs and attending college full-time, so I assumed I was just overdoing it. The day before everything changed, I remember feeling disoriented and bumping into things. Then I woke up the next morning and couldn’t see clearly. I was seeing double and couldn’t focus my eyes at all.

At the time, I was attending college about an hour away, so my mom had to come pick me up. She took me to an ophthalmologist first, but I kept getting these intense migraines, which we later learned were actually due to neck weakness from MG. As my condition quickly declined, she grew more concerned. I couldn’t speak properly, something was clearly very wrong. She took me to the ER for the migraine, and when they gave me pain medication, it triggered full ptosis; my eyes couldn’t open at all.

Luckily, someone in the ER suggested the possibility of myasthenia gravis (MG). I had to wait three weeks to see a neurologist, but once I did, I was diagnosed on the spot after a Tensilon test.

What has helped you most in navigating life with MG?

What was wild, and honestly traumatic about the beginning was that I had never even heard of myasthenia gravis. I was 20 years old, a fully independent college student, and within a matter of days I couldn’t open my eyes or walk across the room.

When they gave me the Tensilon test, I got better for about five minutes. No one explained what it was or what came next. In my mind, I thought: 'Okay, they figured it out. There’s a name. That means there’s a treatment. We’re going to fix it. But that’s not how it works with MG.

The neurologist said it was chronic. He didn’t offer much beyond that. I remember my mom asking if I was dying, if I’d ever get better, or even see again. We didn’t know what was going to happen. All we knew was that the medication they gave me… didn’t help. And from that moment forward, we were in the dark, navigating the unknown, trying to make sense of a diagnosis that changed everything.

What advice would you give someone newly diagnosed?

The biggest piece of advice I can give is to pay attention to how you’re talking to yourself about this illness. Your inner dialogue matters. You didn’t cause this, and you’re not broken. You’re just in a body that’s fighting a war with itself, and that takes time, patience, and radical care.

It’s so easy to pressure yourself, to want to push through and 'just move on.' But MG doesn’t work like that. This isn’t a sprint. It’s a process of learning your body, finding what helps it function at its best, and giving yourself the kind of care that most people never even consider.

How did you first get involved with the Myasthenia Gravis Association?

In the early years after my diagnosis, I spent so much time trying to find anything I could about MG, but back then resources were incredibly limited. Eventually, I stopped searching out of frustration. It wasn’t until around 2010 that I came across the Myasthenia Gravis Association. I remember finding a list of doctors and emailing to ask if there had been any updates, because it looked like it hadn’t been refreshed in a while.

I ended up connecting with Chris Almvig, who was MGA’s director at the time. She responded to my email and said she was impressed by my knowledge. I told her that I’d had MG for nearly a decade and I’d never once met another person who had it. That moment stuck with both of us.

Chris said, “You know, we could make something happen in the Columbia area.” And just like that, she asked if I’d be interested in starting a support group. I was thrilled. We had our first meeting not long after and we’ve been active ever since.

I’m incredibly proud of that. It’s been an amazing experience to help create a space where people with this strange, hard-to-explain condition can finally feel understood.

How long have you been leading a support group, and what has that experience meant to you?

Our first support group meeting was on February 25, 2012 and I’ve looked forward to every single one since.

Leading this group has been one of the most meaningful experiences of my life. I’m constantly amazed by the stories, the strength, and the resilience of the people who walk through that door. There’s something so powerful about being able to say, “I’ve been where you are,” and then actually help someone avoid the pain or confusion you once went through.

There’s healing in that for them, and for me. MG patients and caregivers are some of the most resourceful, smart, and creative people I’ve ever met. Our group creates a space where we can talk about things that most people don’t understand, but here we get it.

What has been one of your most meaningful moments or memories as a support group leader?

All of them. When someone shares their story, I won’t forget how much they’ve struggled and overcame.

What does this new role as Clinic Liaison for our new Columbia partnership mean to you?

This role is exactly what I’ve hoped for, for years. It’s an honor to become what I believe I needed.

How do you see your role helping MG patients at the University of Missouri clinic?

I think about how different it would’ve been if I’d had someone to talk to early on, someone who really understood what I was going through. A person who could explain things clearly, answer questions from experience, and help guide me through the fear and overwhelm.

That kind of presence could’ve changed everything. Now I get to be that person for others. I get to offer what I never had but always needed.

What are you most excited about in this new position?

I’m excited just to be able to help. To hopefully take some of the mystery out of this diagnosis, to let people know they’re not alone, and to be the person I needed when I was going through it.

What do you hope to accomplish in this new chapter of your MGA journey?

I hope the clinic is successful and that the MG community in this area continues to grow.

Having those bonds with others who truly understand this experience… it’s hard to explain how meaningful that is unless you’ve felt it. The things we learn from each other, the support, the validation, it’s priceless.

I know how much it’s helped me, and I want others with MG to have that same sense of connection and empowerment.

How can others get involved or support MGA’s clinic and support group efforts in Columbia and beyond?

There are a lot of ways to support what the MGA is doing, but when it comes to the clinic itself, I think the MGA staff are the best people to guide that. You can find more information about all the MGA's Clinic Partnerships on their website or through emailing info@mgakc.org.

What I can say is this: just showing up whether that’s attending a support group, sharing your story, or simply reaching out is powerful. Connection changes lives. And the more voices we have, the stronger we are as a community.

Learn more about the Myasthenia Gravis Association at www.mgakc.org.

Reach our for more information or a New Patient packet at info@mgakc.org.