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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.”
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.
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.
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List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.
It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.
It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.
The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.
Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association
Learn MoreWhen you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.
There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.
The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.
We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.
It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.
Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.
Learn More(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
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