Throughout my nursing career, I worked with many physicians and providers. Most were kind, helpful, and patient centered. Occasionally, I would encounter a provider that didn’t give great patient care; they were rushed, arrogant, or dismissive. There were also doctors that didn’t have the knowledge or experience to diagnose some patients. But who knew I would one day encounter these sorts of providers in my own diagnostic journey?

This journey began in early 2022. I was highly active, enjoying biking, going to the gym, hiking, and anything that involved family. My legs began to feel heavy, as if I were moving through wet concrete. I rested for a couple of days and felt better. However, a few weeks of leg heaviness and weakness led me to seek medical care.

My primary care physician found nothing of great concern in my exam or blood tests. By now the heaviness in my legs was constant, my arms were weak, and I was having difficulty with balance. I was referred to a neurologist for evaluation. This doctor was rude from the moment he entered the room. When he checked my muscle strength, he yelled and accused me of not trying hard enough. Additional blood tests and MRIs of my brain and spine were mostly unremarkable. I did have an abnormal monoclonal protein in my blood, so I was sent to a hematologist for further testing.

Unfortunately, this was another provider who was not interested in helping me find answers. I was now unable to speak without my voice shaking, and I would occasionally choke during meals. I was struggling with nausea, poor appetite, and I was losing weight. The hematologist was dismissive of my symptoms and was only interested in the monoclonal finding. Additional blood tests were done, and upon follow up I was told, “you don’t have cancer.”  As I tried to ask questions, the doctor held his finger up to cut me off and responded, “I don’t care about those things.”

The unsympathetic attitudes of these specialists made me angry. I decided to do my own research, and I spent weeks tracking my symptoms and trying to identify causes. I would occasionally reach out to my primary care provider, and we would discuss tests or referrals that might be helpful.

Over the next few months, I reached a point where I could no longer wash my own hair, get dressed without help, cook, clean, drive, or walk up a few steps without feeling like I had run a marathon through quicksand. I felt hopeless and defeated. My primary care provider finally sent a referral to a teaching hospital in a neighboring state. There, I was seen by hematology, cardiology, pulmonology, gastroenterology, and a neuromuscular specialist. Each of these doctors was very attentive and concerned about my declining condition, but none were able to reach any conclusions. Over several months I underwent dozens of blood tests and diagnostic procedures. There were a few things out of range or inconclusive, but nothing definitive and I was once again left without answers.

Nearly two years after my symptoms began, I still had no diagnosis or treatment plan. On the recommendation of a family member, I set up an appointment with a rheumatologist who managed their lupus care. I made the three-hour drive to my first visit a few weeks later. The rheumatologist reviewed my medical records and completed an exam. She pulled a piece of information from this record, a result from that record, and another tidbit from another specialist’s exam note. After a 45-minute appointment, she was confident I had myositis. Another blood test and a few weeks later I had a diagnosis of dermatomyositis. Today, after 18 months of treatment, my symptoms have greatly improved. I still have limited endurance and experience crippling bouts of fatigue, but I can get through most days without assistance.

During my diagnosis journey, I encountered providers who were as determined to find answers as I was. I also had some terribly negative experiences with doctors who simply didn’t care about me as a patient. Others just lacked the knowledge to help me with my specific condition. I learned that nobody knows me and my body as well as I do, and nobody will be a better advocate for me than I will be.

During your own myositis “adventure,” keep pushing until you find that one provider who wants to assist you in finding answers. You will likely run across some doctors who dismiss you and your concerns or simply don’t know how to help in your case. But be your own best advocate and don’t be afraid to seek a second opinion…or a third.

Darlene is a retired RN/MHA with experience in provider and patient education. She also worked extensively with insurance providers, Medicare, and Medicaid. She was diagnosed with dermatomyositis in 2024. She lives in Idaho with her husband and cat.

If you’re having trouble finding a provider who is knowledgeable about myositis, check out our Find a Doctor tool.

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For those over 65 or with other risk factors, high-dose or adjuvanted flu vaccines may offer better protection. The CDC and American College of Rheumatology recommend inactivated flu vaccines for people with autoimmune conditions, including those on immunosuppressive therapies.

Dr. Victoria Werth, a member of The Myositis Association’s Medical Advisory Board, advises:

“It is important for people to get the stronger flu vaccine if age appropriate. There may be the occasional patient who has a mild flare, but it is rare.”

Regarding COVID-19, the international COVAD study—spanning over 100 countries—has provided valuable insights into vaccine safety for people with idiopathic inflammatory myopathies (IIMs). Findings show that while individuals with active disease or multiple autoimmune conditions may experience more frequent mild adverse events, serious reactions are rare, and hospitalization rates are low. Importantly, the study confirms that COVID-19 vaccines are generally safe and well tolerated in people with myositis, especially those with stable disease.

Given the potential for infections to trigger disease flares or complications, the benefits of vaccination far outweigh the risks. Patients are encouraged to speak with their healthcare providers about the best timing for vaccination, especially if they are on immunosuppressive medications.

Stay protected this season—get your flu and COVID-19 vaccines. Your health is worth it.

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This year’s fellowship, totaling $107,500, has been awarded to Dr. Angeles Galindo Feria, a rheumatology specialist and postdoctoral researcher at Karolinska Institutet in Sweden. Dr. Galindo Feria’s research project, titled “Clinical and Immunological Determinants of Interstitial Lung Disease in Antisynthetase Syndrome,” aims to revolutionize how clinicians understand and manage lung complications in ASyS by integrating immune profiling with prognostic markers.

Under the mentorship of Dr. Ingrid Lundberg, a globally recognized expert in idiopathic inflammatory myopathies, Dr. Galindo Feria will explore how overactive B and T cells contribute to lung damage in ASyS. Her goal is to develop non-invasive diagnostic tools—including saliva and sputum-based tests—that can predict which patients are at risk of severe, irreversible lung scarring. This approach could pave the way for precision medicine in ASyS, allowing for earlier and more targeted interventions.

This fellowship is a transformative opportunity to change how we understand and manage lung complications in antisynthetase syndrome. Our goal is to move beyond the current one-size-fits-all approach toward true precision medicine.

— Angeles Galindo Feria, MD, PhD

The fellowship was made possible through the Meredith’s Legacy fundraiser, launched by Meredith’s family to support early-career researchers dedicated to improving outcomes for patients with ASyS and ILD. Meredith’s story continues to inspire a new generation of scientists committed to tackling the challenges of rare autoimmune diseases.

ASyS is a complex condition that affects both muscles and lungs, with ILD being one of its most serious and life-threatening complications. Current treatments are often inadequate, and clinicians lack reliable tools to predict disease progression. TMA’s investment in research like Dr. Galindo Feria’s reflects its ongoing commitment to advancing scientific understanding and improving patient care.

Since 2002, TMA has awarded nearly $8.5 million in research grants to support studies across the spectrum of myositis diseases. The Meredith C. Thomas Memorial Fellowship marks a significant milestone in this journey—one that blends scientific innovation with heartfelt remembrance.

Read the press release

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Former US Congressmen and former Mayor of Dallas Steve Bartlett served as the opening Keynote Speaker at MyoCon: TMA’s Global Myositis Patient Conference in Dallas. Bartlett, who was introduced by Mindy Henderson, Vice President of Disability Outreach and Empowerment at the Muscular Dystrophy Association (MDA), was principally responsible for the passage 35 years ago of the Americans with Disabilities ACT (ADA).

In the hour plus of his address, including taking questions from the packed auditorium at the Sheraton Dallas Hotel, it became obvious how Bartlett, in eight short years as a member of the US House of Representatives, passed 18 significant pieces of legislation including the ADA, the civil rights law for those with disabilities. He not only discussed clearly and entertainingly how to use the power of purpose to achieve great objectives, he embodied a formidable purposeful power.

“Start with your purpose in mind,” Bartlett said. “Indeed, write it down to achieve clarity.
Then relentlessly seek to achieve that purpose. Do so with integrity and values, of course, adjusting along the way as facts change, but keep focused on the purpose. You may not achieve exactly what you wrote down, but you often will, and you’ll come a lot closer than if you had not identified your purpose.”

“The Myositis Association has a purpose,” he added. “My challenge to you is to carefully consider and review those purposes. Write them down. Set a time to achieve milestones. Print your purpose on your letterhead, business cards, and website. Tattoo them on your forehead if necessary. Start every conversation with your purpose. Set annual milestones for achieving your purpose so you can measure your success.”

Awareness came early

Bartlett credits his father, an engineer, with instilling in him the need to be purposeful. “My dad put me in charge of our first calf, a one-week old calf named Little Red,” he said. “Little Red died of pneumonia within a week in a cold, rainy, three-day storm. As I was in charge of that calf my father was clear with me: if you had fed the calf with warm milk dipped on a rag, if you had changed the haybed straw ten times a day instead of once, if you had brought Little Red inside the house in front of a warm stove and slept with both of you wrapped in blankets, Little Red would have lived.”

“Cruel to say to a five-year old, perhaps,” Bartlett added. “But the lesson of doing everything you can to achieve your purpose never left me.”

Purpose in politics

Bartlett rarely can remember when he was not interested in politics and what it could achieve to improve the lives of others. Politics was always discussed at home. While he was in high school, he was elected President of the Young Republicans for all of Dallas. He met his future wife Gail at a Republican Club bake sale and the two attended the University of Texas in Austin. In Bartlett’s freshmen year, he was elected vice chairman of the Texas Young Republicans. Bartlett and Gail married after their sophomore year in college.

At 24, Bartlett became chairman of Dallas’ Urban Rehab Board and President of the Dallas County Republican Men’s Club. In 1977, when he was 30, he was elected to the Dallas City Council. Four years later, he was elected to represent Texas’s third Congressional District, northeast of Dallas.

Few members of Congress are responsible for any signature legislation in their first term. This is especially true for members of a minority party. Being purposeful, however, Bartlett interviewed a hundred incumbent members of Congress to understand how he could become an effective member of Congress. Within his first ninety days in office, he succeeded in passing an amendment to let the market set Federal Housing Authority interest rates.

He also sought a seat on the Select Education Subcommittee, the smallest subcommittee in the House of Representatives and a committee unsought by high profile Congressional members. The subcommittee had jurisdiction over identifying barriers of independence for persons with disabilities. The chair of the committee asked Bartlett to write what the purpose of the subcommittee should be.

“I adopted language from the Presidential Commission on the Handicapped Towards Independence, which was our blueprint for disability legislation,” he said. “I passed eight laws towards that independence, and that all led to the Americans for Disabilities Act (ADA) passed in 1990.” 

ADA became possible when George H. W. Bush became president, and Bartlett was now member of the majority party in the House. Years of working with Democrats when they were in charge of the House now encouraged Democrats to support passage of the ADA.

“We were all totally focused on writing Civil Rights legislation that would have broad public support, be immune from legal challenges, and create much greater independence for that 20 percent of the population living with disabilities,” Bartlett said. “Is the ADA perfect? No. But we’ve come a long way in the last 35 years. Employment, transportation, education, housing, sidewalks, computers, healthcare are all vastly different and more accessible today than in 1990.”

“One statistic is often overlooked,” he added. “At the passage of the ADA, the employment rate for those of working age with disabilities was about 23 percent. Today it’s about 38 percent. Still short of full employment, but an employer cannot discriminate and has to provide reasonable accommodation.”

The pull of greater purpose

After nine years in Congress having written and passed 18 pieces of legislation, Bartlett was presented with an opportunity to run for mayor of Dallas. “The City of Dallas had fallen on hard times,” he said. “Hard to believe given Dallas’s incredible success now. But downtown Dallas had not had a new employer move in for ten years and had lost 100,000 jobs. Violent crime had increased in every single category. Worse, the city had lost belief in itself.”  

Again, Bartlett employed the power of purpose. In his inaugural address as mayor, he pledged his administration would reduce the number of violent crimes in all four categories within one year. He achieved that in five months. Another purpose was to bring new employers to the downtown. The first one signed a lease in downtown Dallas within 45 days of Bartlett being mayor.

He currently is putting final touches on a non-fiction book titled AH AH! The Power Of Purpose. The book is scheduled for publication in October. “Getting the message out to others on how to better put power into their purposes is my purposeful purpose. All of you involved with The Myositis Association, those experiencing the daily myositis journey, physicians, healthcare providers, clinical researchers, TMA Executive Director Paula Eichenbrenner and her staff, and TMA ‘s directors, all of you have a shared purpose and I am grateful and honored to have had the opportunity to be somewhat useful to you.” 

 
Stanford Erickson is a veteran journalist, author, and playwright. A longtime member of the National Press Club, he covered US presidents and global leaders for over 40 years. He’s written books on politics, leadership, and spirituality. His wife, Nancy Marx Erickson, leads TMA’s WomenWithIBM Affinity Group.

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I just got back from MyoCon25, and honestly? I’m still recovering—in a good way. For those of us living with a rare disease like inclusion body myositis (IBM), this kind of conference is more than just PowerPoints and name tags. It’s a lifeline. A chance to be with people who get it without needing a long explanation, and to hear from experts who actually know what they’re talking about.

The first thing that struck me was how valuable the breakout sessions were this year. They weren’t just “talk at you” presentations—they were real conversations. Practical tips on adaptive exercise, nutrition tailored to inflammatory myopathies, and how to navigate daily life when your body no longer cooperates like it used to. There was one especially helpful session about assistive devices—not just what to use, but how to mentally and emotionally adjust to needing them. Another session touched on caregiver relationships, which hit close to home for many of us. It wasn’t all serious either—there were laughs, some gentle teasing, and even some hallway scooter races (we’re not naming names).

The keynote speaker set the tone from the start: former Representative Steve Bartlett who co-sponsored the original ADA legislation. Hearing directly from someone who helped shape the laws that protect our rights reminded us that advocacy isn’t optional—it’s survival.

And the closing speaker, Dr. Julius Birnbaum, gave us a gift with his talk Living Well with Autoimmune Diseases. He brought clarity, empathy, and just the right dose of humor. His message—and his book of the same title—wasn’t sugar-coated or unrealistic. Instead, it offered hope that felt grounded. Yes, our diagnosis may rewrite parts of the script, but the story itself is far from over.

And then there were the people. My people. The ones who know what it’s like to drop your fork because your grip gave out, or to stare at a staircase like it’s Mount Everest. We swapped tips, emails, and stories—some heartbreaking, some hilarious—and formed bonds that go beyond the conference badge. It’s a strange kind of comfort, finding yourself in a crowd of people with the same rare thing.

The real cherry on top was hearing from the doctors and researchers leading the charge. These weren’t fly-by-night internet experts—they’re the ones in the trenches, studying this disease from every angle. They shared updates on ongoing clinical trials, new diagnostic approaches, and the latest thinking on what actually causes IBM. And they did it in plain English, without making us feel like we needed a medical degree to keep up.

So yes, I came home tired. But also encouraged. Seen. Reminded that even though this disease is rare, I am not alone—and neither are you. MyoCon 2025 gave us knowledge, support, and community. And that’s more powerful than anything you’ll find in a textbook.

Linda Thomas was diagnosed with IBM in 2023. Her disease has progressed slowly so far. She journals about her journey in a blog at ibmwarrior.com and has written three books on self improvement. After several jobs in leadership positions, she failed retirement three times but is now getting the hang of it. 

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Their findings, published in the journal Sleep Epidemiology, suggested that poor sleep predicted a decline in mobility after a chronic health diagnosis, especially in those with signs of sleep apnea.

“Poor sleep is often overlooked or assumed to be a consequence of aging, functional decline, or disability in those with chronic health conditions,” said the study’s senior author Tiffany J. Braley, MD, MS, associate professor of neurology. “However, sleep disturbances and disorders may also be an upstream contributor to these issues.” Braley directs the multiple sclerosis and neuroimmunology division at the University of Michigan Health.

The study’s first author, Daniel Whibley, PhD, added that sleep has a direct impact in how patients accomplish activities that may be part of their treatment. Whibley is an assistant professor of physical medicine and rehabilitation at University of Michigan Health.

Chronic disease coupled with inadequate sleep was also associated with an increased use of assistive devices such as a cane or wheelchair. Braley said she encourages providers to screen patients with chronic conditions for sleep disturbances, and refer them to sleep specialists, because the vast majority of sleep disorders are highly treatable.

Read the study.

See a recording of a TMA Empowerment Clinic “Getting a Good Night’s Sleep with Myositis.”

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Tri will be honored with TMA’s Heroes in the Fight Patient Ambassador Award on September 20, 2025, in Dallas, TX. The gala is the centerpiece of MyoCon: TMA’s Global Myositis Patient Conference, recognizing outstanding leadership and excellence in the myositis community.

The Myositis Heroes in the Fight Patient Ambassador Award is annually presented to an individual that has demonstrated sustained effort and extraordinary success in raising awareness of myositis diseases among the public.

From the sands of the Olympic Games to the stage of advocacy, Tri Bourne exemplifies perseverance. As a professional athlete, Olympian, and broadcaster, he didn’t let a diagnosis of dermatomyositis in 2016 define his journey. Instead, he turned challenge into fuel. Tri returned to competition in August 2018, and won the first post-diagnosis international tournament he entered on October 4, 2018 at an FIVB qualifier in Qinzhou, China. Tri has been rising, competing, and inspiring countless others facing myositis since then.

“I’m only going to be a man of my values.”

Tri Bourne

Tri Bourne has been featured in AwareNow as the Official Ambassador for Invisible Disabilities Awareness and has had the honor of wearing a Team USA Jersey for 10 years! He claimed 12 Association of Volleyball Professionals titles, including two Manhattan Beach Opens, before retiring this fall from professional beach volleyball.

Sandcast Podcast

Tri Bourne hosts the popular SANDCAST podcast, the first and leading beach volleyball podcast in the world, with cohost Travis Mewhirter. You can catch the latest in beach news and episodes here.

A Family Affair

Tri will be accompanied in Dallas by his wife Gabrielle and their two children. Gabrielle is a luminary in her own right—as an actress, producer, and builder in addition to being a myositis care partner.

Tri has been an incredibly impressive athlete during his 14 years as a professional beach volleyball player. He was the AVP Rookie & Most Improved Player in 2013, and then—a decade later—his 2022 season featured three AVP wins.

“There are a lot of stats, but what really impresses us at TMA is the 698 days between matches that Tri spent sidelined over the 2017-18 seasons. He was battling back from dermatomyositis each and every one of those days, demonstrating the resilience of our myositis community. Tri and Gabby Bourne are truly heroes in the fight against myositis,” says Paula Eichenbrenner, TMA Executive Director.

TMA is so excited to welcome the “Bourne on the Beach” family to MyoCon 2025!!!!

Thanks to argenx, the lead sponsor for TMA’s Patient Ambassador Award.

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IBM is the most common idiopathic inflammatory myopathy in adults over 50, yet it remains poorly understood and without FDA-approved treatments. Dr. Liarski’s retrospective analysis included 732 IBM patients and 1,215 matched controls, with service periods ranging from World War II to the Persian Gulf War.

Key Findings

• Drastically reduced survival: IBM patients had a mean survival of just 8.5 years, compared to 15 years for matched controls.
• High comorbidity rates: Veterans with IBM were significantly more likely to have diabetes (49.5%), cancer (38.4%), and a history of smoking (23.2%).
• Lung involvement: IBM patients showed higher rates of bronchiectasis (57.5%) and interstitial lung disease (61.9%), independent of smoking status.
• Racial disparities: Black veterans were overrepresented in the IBM cohort, making this one of the most racially diverse IBM populations ever studied. This finding raises important questions about potential genetic, environmental, or service-related risk factors.

IBM remains under-recognized compared to other neuromuscular diseases, despite its devastating impact on quality of life. As Dr. Liarski’s work shows, veterans living with IBM face not only physical decline but also significant psychological burdens due to limited treatment options.

TMA applauds this important contribution to the field and calls on the medical and research communities to prioritize IBM in future studies and healthcare planning.

 Vladimir M. Liarski, MD, is a rheumatologist and physician-scientist at the University of Pittsburgh School of Medicine and the VA Pittsburgh Healthcare System. His research focuses on autoimmune diseases, immune cell interactions, and advanced imaging techniques to uncover the mechanisms behind IBM and related conditions.

Read the published report.

TMA’s Military Veteran with Myositis Affinity Group hosts patients and care partners who have prior military service. This group provides a comfort zone for veterans to discuss issues specific to their community. It meets monthly on the second Saturday at 12pm ET. Register here.

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That’s why intentionally toning down tech use can be a powerful act of self-care. Taking breaks from screens allows our minds to rest, our bodies to move, and our attention to shift toward more grounding, meaningful experiences. Whether it’s reclaiming quiet moments, reconnecting with nature, or simply being present with loved ones, unplugging helps restore balance and clarity.

This list offers practical ways to step back from technology and step into healthier habits. You don’t need to go off the grid; simply making small, consistent changes can make a big difference. Think of it as a digital reset: a chance to recharge your mental batteries and rediscover what brings you peace, joy, and focus.

Here are our 10 tips to help you take a digital vacation and boost your mental health.

1. Set screen-free hours – Designate times (e.g., during meals or before bed) to disconnect from devices.
2. Use “Do Not Disturb” mode – Silence notifications to reduce stress and improve focus.
3. Create tech-free zones – Keep phones out of the bedroom or bathroom to promote rest and mindfulness.
4. Replace scrolling with strolling – Go for a walk instead of reaching for your phone.
5. Read physical books – Give your eyes and brain a break from screens.
6. Practice analog hobbies – Try journaling, painting, gardening, or puzzles.
7. Limit social media – Use apps to track and reduce time spent on platforms that trigger comparison or anxiety.
8. Schedule digital detox days – Take a full day off from screens weekly or monthly.
9. Reconnect in person – Prioritize face-to-face conversations over texts or video calls.
10. Be intentional – Ask yourself, “Is this helping or harming my well-being?” before picking up a device.

Find additional self-care practices here.

Wellness and self-care ideas from members.

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After returning from Sweden in July 2023, I noticed something was off. My usual walk from the train station to my home became difficult. My muscles felt weak, and I didn’t feel like myself. I thought to myself, I need to join a gym. This excess weight has to go, and exercise will be the answer. Little did I know how wrong I was.

I felt like the Tin Man from The Wizard of Oz. Where was my oil can?

I met with my primary physician and had blood work done. A few days later, I received a call telling me to go to the emergency room immediately. They told me my CK level was 20,000. What? What even is a CK?

I was admitted to the hospital and bombarded with questions. Do you run marathons? Me, I thought? They must have had the wrong patient. Do I look like a runner? Maybe I was decent in high school. Not anymore.

More bloodwork was taken, along with MRIs and ultrasounds. A muscle biopsy was done. This was serious. The doctors said it might be rhabdomyolysis. Rhabdowhat?

I was discharged with a prescription and told to find a rheumatologist. I found one right away. When the biopsy results came in, I was diagnosed with immune-mediated necrotizing myopathy (IMNM).

It was only the second week of October. Everything happened so fast.

What? When? Where? Why?

Was this caused by food? Was it environmental? I had never heard of this disease before.

That same week, I was admitted again and met with the wonderful doctors from Hospital for Special Surgery in New York City. They have a dedicated myositis team. While in the hospital, I was on a lot of medication.

The simple things, or maybe the things we take for granted, I could no longer do.

My muscle weakness worsened. I couldn’t lift my legs. Even going to the bathroom was extremely difficult. Everything became harder. My body was failing me. My immune system was aggressively attacking my muscles and causing the cells to die.

That was almost two years ago.

Today, I am on a medication regimen with Rituximab every six months, IVIG every four weeks, and azathioprine every day. And physical therapy is a must! 

I also attend webinars and conferences hosted by The Myositis Association. Positive thoughts and trying to stay focused on a healthier lifestyle are also part of my plan. I refuse to be taken down mentally.

The regimen seems to be working.

Remember this: Most of your stress comes from the way you respond to life’s situations. Change your attitude, and look for the good in every experience.

Jacqui Garcia lives in Long Island, New York with her family and dog. She is a retired NYC Supervising Probation Officer and presently a travel agent.

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