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As you walk around the Comicon conference, you’ll witness all kinds of costumes — people dressed as their favorite cartoons, superheroes and TV characters. You’ll likely find the “cast” of Game of Thrones and many renditions of Wonder Woman, but there’s a recent new addition to the Comicon character list that may be new to you: the Myositis Warrior.
When “off duty,” the Myositis Warrior is Rhonda Rogers, a vivacious woman who will certainly make you smile with her quirkiness and charm. Her superpower? Not letting her rare disease diagnosis of inclusion-body myositis, or IBM, stop her from living a full life.
Myositis Warrior was created by Rhonda to spread awareness about the condition and for rare diseases in general.
“People will remember me. There are complete strangers who now know how to say the word myositis!”
Myositis is a slowly progressing disease, causing unpredictable weakening of all major muscles. Rhonda describes her day to day challenges: “Sometimes my legs turn into Jell-O, and my knees can buckle unpredictably. Sometimes lifting a milk carton is challenging, and I can’t open a jar to save my life.”
A life-changing moment at work
More than a decade ago, Rhonda experienced a super hero moment that was a little different. While at work, a small trip over a security gate sent her flying. “I full-on ‘supermanned’ head first, arms out,” she describes.
Because it happened on the job, her employer required that she immediately go to urgent care and get x-rays and tests done for insurance purposes. She thought it was all a bit much, but it turned out to be vitally important.
When Rhonda mentioned to the doctor during that visit that she had noticed her knees seemed to be getting weaker, he chuckled and responded, “Of course. I hear that every day.”
But it turns out it was not an everyday thing. The very next day, she got a call from the doctor’s office that she needed to come in right away. Her blood results had come back irregular, and she was referred to a rheumatologist who diagnosed her polymyositis, a specific type of the broader rare disease called myositis.
New diagnosis, new challenges, new persona
For 12 years, Rhonda tried every drug and treatment in the book for polymyositis, but she wasn’t getting any better. In fact, she was getting worse.
Desperate for something else to work, she drove two hours away to apply for a clinical trial. The doctor took one look at her and immediately excused herself from the room to look at her records. When she came back in, she took Rhonda’s hand and told her she didn’t have polymyositis after all, she had inclusion-body myositis, also known as IBM.
“A classic case of mistaken identity,” Rhonda describes.
For Rhonda, this was devastating news because this specific type of myositis is not only incurable, it is untreatable.
“No cure is one thing but not even a treatment? That’s a pretty dark hole to put somebody down,” she said.
Instead of dwelling in darkness, Rhonda decided to use her charisma to be a light in the rare disease community as the “Myositis Warrior” — a role that doesn’t just stop at advocacy. Rhonda is taking concrete steps to advance research to find treatments for IBM. Every month, she drives three hours each way to participate in a clinical trial.
She is also very excited about being a part of AllStripes, an online platform that makes it easier for rare disease patients to contribute to drug research by sharing their de-identified medical data:
“People don’t want to research my rare disease because they think they’re gonna have to travel down a rickety one-lane road with rocks. AllStripes is offering us a platform that gives us the autobahn. They’re streamlining the process. They want to make it easy for people to research us.”
Rhonda’s superhero mindset keeps her pressing forward to fight for a better world for rare disease patients:
“Getting people to do research on rare diseases, that is a tough thing. Everybody wants to cure cancer. Everybody wants to cure diabetes. Who wants to cure somebody with a weird disease nobody has ever heard of?... ‘Let’s just ignore them. Maybe they will go away.’ I will not be ignored.”
She has some advice for other who want to be active in this fight.
“Education. Advocacy. Take part. Register with AllStripes. Make a difference. Your future could depend on it,” Rhonda said.
