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.

The post Pushing for an Answer appeared first on The Myositis Association.

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.

The post Finding the Good appeared first on The Myositis Association.

Before I retired, I worked in the pharmaceutical industry, helping drug development teams make their strongest case to the FDA for approval of their compounds across a broad range of therapeutic areas. Now as a person living with inclusion body myositis (IBM), I had been looking for opportunities to participate in a clinical trial, eager to “see it from the other side” as a participant rather than someone charged with interpreting the results.

When I heard about the Phase 2/3 trial of Abcuro’s ABC008 (now known as ulviprubart), I was all in. My decision to participate was easy to make, as I suspect it would be for most of us with IBM. We don’t have a well-recognized drug therapy and most of us (including me) don’t take any drugs for IBM. What do we have to lose? Being on placebo isn’t a major concern, as that would be the same nothing we currently have. And the earlier tests of the drug did not raise significant safety concerns.

My first task was to determine whether I would qualify. The listing of “Eligibility Criteria” on ClinicalTrials.gov very helpfully laid out the minimum requirements. There would be other inclusion and exclusion criteria, but what’s shown there was enough to get started.

• Sometimes, the criteria may seem arbitrary and restrictive. From my work experience, I know that criteria help ensure that enrollees can perform the activities—such as standing up from a chair—that are evaluated in the trial.
• Eligibility criteria have the additional role of establishing a relatively homogenous (similar) group of participants. This is important for the interpretation of the trial results. If the groups are similar, any differences seen between those getting the drug and those getting placebo can be seen as the drug’s effect, and not some other factor.

The second task: which of the trial sites might consider me? I knew that my chances would be better with an organization that had access to my records and where I had established relationships with providers over the years.

• For me, that meant the Myositis Center at Johns Hopkins University, where I had been followed since my diagnosis in 2014. But Hopkins was not listed as one of the first sites to be open for enrollment.
• With a total of 18 visits over 80 weeks, the site would need to be reasonably close to home. Honestly, we underestimated the time and burden of travel on me and my family. Still, I am retired, and the flexibility in my schedule should make it possible.

The third step: to make contact and find out if the sites that were convenient for me were considering new patients for enrollment. If so, what information would they need to see and how could my records be transferred? In my case, there was particular interest in my muscle biopsy, which is almost always necessary to confirm the diagnosis prior to enrollment in any IBM trial.

My profile seemed to fit the needs of the trial, and I was offered an appointment to begin screening at a trial site in Boston. It took several visits to complete the tests and confirm that I qualified. These early visits also educated me about what to expect: the time and activity commitments I would be making, what was known so far about the drug’s effect, and what side effects I might expect.

• Screening is a bit of a black box, involving a lot of blood tests (15 tubes!), a physical exam, an in-depth review of my health status, and some less formal evaluations. Was I able to perform the necessary muscle tests consistently? Was there anything in my health history (like cancer or severe arthritis) that could interfere with the trial? Was I likely to be a reliable participant in the trial? (Missed appointments lead to gaps in the data, which can make the results less reliable.)

All aligned for me, and I was invited to enroll. At my initial visit, I signed the informed consent, repeated many of the screening activities to establish a baseline, and received my first dose of test medication. I was on my way for the 80-week study entitled “Randomized, Double-blind, Placebo-controlled, Multicenter Trial to Determine the Efficacy and Safety of ABC008 in the Treatment of Subjects with Inclusion Body Myositis.”

After an initial flurry of visits, I settled into traveling to the clinic every eight weeks, where multiple tubes of blood were drawn, various tests were performed, and I received a dose of the test medication. A study nurse administered it by an injection under the skin in my abdomen. It may have been placebo, or a low dose (0.5 mg/kg) or a high dose (2.0 mg/kg) of ulviprubart. This was a “blinded study,” which means no one knows whether I received drug or placebo. (Not me, the doctor, study nurse, pharmacist who prepared the dose, nor anyone at the company know what my injections contained.)

At the end of the trial, I was offered enrollment in an “open label” follow on study, which means everyone knows that we are receiving the drug at the highest dose: 2.0 mg/kg body weight.

• I had both hoped and expected that the company would offer such a trial. The purpose of this type of trial is to learn what happens as patients stay on the product for longer periods of time, perhaps even several years. Do new side effects emerge? Does the product seem to maintain its effect over time?
• People ask me whether this second study is being done because the first study showed evidence of efficacy. It’s important to note that no one knows the results of the double-blind trial. That answer won’t come until the final patient in the initial study completes their final study visit. All of the data from all of the 250 or so patients would then be entered in the database. There’s a disciplined, lengthy process by which the data is checked for accuracy and completeness before the database can be “locked.” Only then can the patient data be sorted into groups by who received drug and at what dosage and who received placebo to allow the effect of the drug to be compared to placebo.

I am frequently asked is ulviprubart helping? My honest answer is, I don’t know. I feel as if my disease progression is slow, but it always has been slow. Based on what I have learned about the medication, I don’t expect to regain the strength I’ve lost as it does not rebuild muscle. What is does do is deplete (remove) a particular type of T cell that is believed to be involved in IBM. Based on a report presented at the American Academy of Neurology meeting, it does that very well.

The real question is, does depletion of the problem T cells matter? More specifically, does ulviprubart affect the progression of IBM?

• To obtain regulatory approval, the drug needs to show in a clinical trial that it changes how patients feel, function, or survive. The hope is that the first study will show that ulviprubart slows, or perhaps even stabilizes disease progression as measured by the IBM Functional Rating Scale (IBM-FRS) and that this change is different from what is seen with placebo.

As we all know, it’s difficult to measure disease progression with precision, and while the IBM FRS is the primary endpoint, additional data from other types of tests are being collected to help understand other effects of the drug. These other tests include MMT (manual muscle testing), TUG (Timed Up and Go: how long does it take the patient to get up from a chair, walk three yards, and return to the starting position), strength measurements of fingers and legs using dynamometers, and several PROMs (Patient Reported Outcomes Measures: questionnaires filled out by patients.)

When will we know? We understand that the initial read of the primary endpoint of the placebo-controlled trial is currently planned for first quarter 2026. Until then, all of us living with IBM are eagerly awaiting the results.

Martha Arnold is a former member of TMA’s Board of Directors. She has a background in marketing and regulatory communications within the pharmaceutical industry. Martha was diagnosed with inclusion body myositis in November 2014. She lives in Pennsylvania with her husband Mark.

A version of this article was published in the Summer 2025 issue of The Outlook magazine.

The post Seeing the other side: On being a clinical trial participant appeared first on The Myositis Association.

My wife Marilyn has dermatomyositis, diagnosed in 2008. Her dermatologist initially thought she had lupus, but two years later she finally saw a rheumatologist who knew exactly what Marilyn was suffering from. “The Man,” as I call him, now manages Marilyn’s myositis treatment, and we often touch base with him about meds prescribed by her other doctors who don’t understand myositis.

Once we recovered from the shock of Marilyn being diagnosed with a rare disease, we learned all we could about DM. That’s when we joined TMA and began attending the TMA conferences. I consider myself a “care partner” as opposed to a “caregiver,” because we’re a team. We fight this disease together.

As her partner in this disease, I watch for telling signs. I notice when Marilyn gets fatigued, for example, or when her right eye starts to droop. When her skin flares, I know to draw a circle around the rash to see if it’s spreading, which means things are getting worse. I know how to lift her out of a chair, and I know when she needs rest.

When Marilyn was first diagnosed, we talked with our children about what myositis means and the impact it would have on all of us. The biggest disappointment for Marilyn was having to give up taking care of our young grandchildren. She no longer had the mobility or the energy needed to safely care for them. Instead, we started spending time with the kids through Sunday family dinners and attending their school and sports events, even if we had to watch from the car. Most of our grandchildren are grown now, but they still look forward to those Sunday dinners, as do we.

Myositis has challenged us but also helped us to focus on what’s really important. Before myositis, we enjoyed being active: exercising, traveling, dancing, and entertaining. Myositis took a lot of that away, but we learned to adapt, finding ways to still do things we enjoy.

We started traveling again, calling ahead to check for accommodations with handicap access and no stairs. When we go to the beach, I set up a tent so we can still enjoy the sand and surf. We even dance, albeit from a sitting position.

The decision to sell our two-story home and move into a one-floor townhouse was really difficult. Without the big yard, even the dog felt that one! But one-floor living made life easier for us. We installed a high toilet and walk-in shower and added a large patio with an awning so Marilyn can be outside without risking a flare from the sun.

Before we joined TMA, we’d never met another person with myositis. Thanks to TMA’s Annual Patient Conferences, though, we’ve met so many others who are in our position. We’ve even had conversations with some of the leading myositis experts in the field. Marilyn has become her own advocate, and I’ve met, learned from, and shared with others who care for someone with myositis. We now, and will forever, consider these fellow members of the myositis community our friends.

And we’ve learned so much through TMA. When we heard about new treatments like IVIG, we shared that information with “The Man.” We’re fortunate that our medical partner, her doctor, was open to trying new treatments. IVIG has made it possible for Marilyn to wean off prednisone and methotrexate after seven long years.

As a husband, father, and profesional, myositis has affected me personally in many ways. I’ve always made decisions based on how it will affect Marilyn and our family, so when she first got sick, I took early retirement. It’s tough sometimes, because I’m a very outgoing person. When I went back to work part-time, I laid down the ground rules with my employer: my schedule had to be flexible.

The toughest thing I struggle with is watching Marilyn’s pain and loss and not be able to fix it. I like making people smile or laugh; it’s good medicine, and I tend to use humor as a way to cope and communicate.

Marilyn and I are always looking and hoping for a cure. But we will continue to fight, we won’t let myositis win. And I will always be Marilyn’s care partner.

Ed and Marilyn McGrath have been committed members of TMA for more than a dozen years. They live in Troy, NY and are the proud parents of three children and six grandchildren.

This story first appeared in the Winter 2023 issue of TMA’s quarterly magazine The Outlook.

Please help TMA provide the kind of support and education that was so important to Ed and Marilyn by making a tax deductible donation now.

The post Partners in the fight  appeared first on The Myositis Association.

Excellent medical care and some luck stabilized him, and he began regaining the use of his limbs in the rehab hospital. Bill was grateful to find The Myositis Association (TMA), which helped him learn about his disease and advocate for himself within the medical system. “Don’t go it alone. Find people who have been on this journey, who have been there and done that. It helps immensely.”

Will you help people like Bill find support when their lives are turned upside down?

“The TMA patient conference and the Chicago support group were so helpful,” Bill said. “They taught me about medical self-advocacy and managing my own health care. I had a really unusual case, and given how rare myositis is, I asked members of the TMA Medical Advisory Board if they would advise my own doctors, which they did.”

Bill worked harder than he ever had to regain use of his body. “It’s important to mourn the death of the person you used to be in order to find out where you go from here.” First he defied the odds by walking, and eventually he worked up to skiing again.

“My support group helped me learn to trust myself and what is going on in my body. They also helped me navigate diagnosis and treatment hell – I am so grateful for them.” Now Bill goes back to the rehab hospital that nursed him back to health to pay it forward with other patients going through hard times. Bill has also served as co-leader of TMA’s Chicago Support Group for many years, a group that has been continually active for more than 30 years!

Please make a gift today to help people like Bill find support and pass it on to others.

Thank you for your generosity and being a vital part of our community during Myositis Awareness Month!

TMA hopes to raise $70,000 for Myositis Awareness Month – please help us reach our goal!

The post Don’t go through this alone appeared first on The Myositis Association.

My myositis journey began in 2017 when my pulmonary doctor referred me to a pulmonary specialist at St. Joseph Hospital in Phoenix. I was having difficulty breathing and there was a five-millimeter (about 1/5 of an inch) nodule on my right lung that the referring doctor wanted to have biopsied. The specialist scheduled a series of tests: pulmonary function test, complete blood work, EKG, MRI, and CT scans of my chest.

The results showed that I was vitamin D deficient and Anti-Jo-1 antibody positive. I was also diagnosed with interstitial lung disease, polymyositis, and antisynthetase syndrome. My lab results were off the charts, which explained why I was always fatigued and in so much physical pain. Suddenly the focus was no longer the nodule but everything else they discovered. I remember my pulmonologist being very concerned. I could hear it in his voice as he repeated the plan of action with my husband and me.

Part of that plan was to start me on oxygen every night with a portable machine set up by my bed. I was having nocturnal hypoxia, a drop in oxygen levels in my blood when I was sleeping. I was overwhelmed at times, especially when an IV treatment my doctors ordered was denied by my insurance. Other options were prescribed, including steroids and other medications to decrease inflammation in my muscles and lungs.

I also saw a GI doctor, because my liver enzymes were extremely high. I had a liver biopsy to make sure there were no issues there. Only years later did I realize this was caused by myositis. I was also referred to see a cardiologist that I see regularly.

During this time, I began researching myositis. I found The Myositis Association and the Women of Color Affinity Group. I joined TMA immediately, because I needed to understand what I was going through and communicate with other women who were navigating what I was now walking into.

I didn’t understand the disease at all or the seriousness of it. As I listened to the women share their journey with myositis, the ups and downs and what to look for, I realized how serious this was and that I needed to become my own advocate. Then I remembered the concern in my doctor’s voice. I was already navigating other autoimmune illnesses and praying that a cancer diagnosis remained dormant. I figured nothing could be more life altering than cancer. I was wrong.

The women provided me with support and resources, but most importantly their testimonies gave me hope for a positive outcome. I had to dig deeper in learning about polymyositis, ILD, and how it was affecting my body. Although we all may have the same illness, the outcome is different for each of us. Getting involved with TMA also helped me learn more about the different types of myositis other warriors were navigating.

Up until the summer of 2023 my myositis and ILD were stable and manageable. When it began to shift, my rheumatologist and pulmonologist started working together to get me approved for a drug that would slow down the progress of my ILD. I was approved for Actemra, a weekly injection under the skin of my abdomen. My CellCept dose was also increased, and it worked to slow the progression of my lung disease.

This made me feel better, and I decided to attend the TMA Conference in San Diego that year. I sat in on several workshops on how to manage my myositis and ILD, but the one workshop I wanted to attend the most was “Cancer and Myositis.” This session confirmed that there is a connection between these two diseases.

This realization was especially important to me, because the day after the conference I was scheduled for a bone marrow biopsy. The results showed my plasma cells had increased from 20% to 30% cancerous after 9.5 years. By December, my doctor wanted to do another biopsy, but I declined. By March she insisted. That biopsy showed 66-70% of my plasma cells were cancerous.

In April 2024 I started treatment for multiple myeloma, a type of cancer that affects plasma cells. My doctors were awesome, working together to decide how to handle my current medications. All my medications for my ILD, polymyositis, and some autoimmune issues had to be paused, because they would not work with chemotherapy.

I could not believe this was happening to me. I worried that I would have a flare up of my fibromyalgia and polymyositis. At the time of my diagnosis, I was starting a new job working for Veteran Affairs, launching a book, and running an online business and a women’s empowerment group. I remember thinking to myself how much can one person handle? I decided it was time to pause everything and focus on my health.

I’ve always been an advocate for maintaining one’s mental health and self-care, especially when navigating challenges we face with this disease. I had to do the same for myself. After four rounds of chemotherapy, I was hospitalized for 17 long days in September to receive a stem cell transplant (SCT), which included a high dose of chemotherapy to wipe out any remaining cancer along with all my hair.

In December, I hit 100 days of recovery after the SCT and decided to fundraise and participate in the Multiple Myeloma Walk. I had the support of several TMA warriors. This was also the first time I walked three miles without needing an inhaler or oxygen.

In December I was also released to resume care with my rheumatologist and pulmonologist. Both decided to not have me restart the medication for my polymyositis and ILD. Everything was stable and my labs were normal for the first time in a very long time. Today I am only taking maintenance drugs for multiple myeloma, and everything looks good.

I am reminded that life struggles happen to all of us, but it is what we do with it that matters. 2024 was a year of me slowing down to heal. I see 2025 as my season of rest and reflection. As part of my healing journey, I invited women to share stories that would inspire others to reach deep down inside and utilize the warrior within. In April of 2024 I launched an anthology of those stories called Awaken Your Inner Warrior, which became a best-seller.

We all have the tools to navigate some of the most challenging times in our lives. All we have to do is dig deep and tap into our warrior mentality. Little did I know that I would have to reach for my own inner warrior to keep me moving forward while life kept shifting. Our diagnosis doesn’t define who we are. It’s just a piece of all the things that affect our lives. We ultimately have the last say. I am a myositis and cancer WARRIOR.

Kimberly Branche is a life coach, entrepreneur, advocate, and survivor. Her life is a powerful testimony of resilience, faith, and the strength to rise through adversity.

Please help TMA provide the kind of support and education that was so important to Kimberly by making a tax deductible donation now.

The post I am a myositis and cancer warrior appeared first on The Myositis Association.

She went to the ER, desperate to find out what was going on. After being tested for everything under the sun, a myositis panel revealed that she had dermatomyositis (DM). She thought, “I can’t believe it took 10 years to get a diagnosis for this serious disease. How is that possible?”

Will you help people like Mia, whose young lives are permanently changed by myositis?

Ironically, Mia works in biomedical research and does muscle research at work. She found The Myositis Association (TMA) online. Mia thought, “Please tell me other people go through this. Will I be disabled? Can I lead a normal life?”

She was so relieved to find TMA. Not only did she learn a lot about DM, but she read about people living reasonable lives with the disease. “TMA is also advocating in the world, promoting awareness among researchers and medical professionals, which is so important.”

This awareness is particularly critical because DM is an invisible illness, and it’s hard to communicate what she is going through – even to her supportive friends. “The more TMA reaches out to the world, the more people know these diseases exist.”

Please make a gift today to help raise awareness about myositis and help people like Mia.

TMA cannot make this impact without your generosity! Thank you for supporting us during Myositis Awareness Month.

TMA hopes to raise $70,000 for Myositis Awareness Month – please help us reach our goal!

The post DM is an invisible illness appeared first on The Myositis Association.

My journey with myositis has been a little more than twelve years long now! I was first diagnosed at the age of 43 with polymyositis after a six-month-to-one-year long history of falls, weakness, and joint/muscle pain. My most telling symptom: I was unable to properly ride a bike, when I had no previous difficulty. The bike just kept flopping over when I tried to pedal it!

I was very fortunate to find a practitioner who ordered a CK level early in my journey, which was followed almost immediately by a muscle biopsy that resulted in a diagnosis of polymyositis. I was referred to a rheumatologist who ordered an ANA panel, and it was discovered that I had the anti-SRP antibody.  This changed my diagnosis to immune mediated necrotizing myopathy (IMNM).

At that point I was being treated with prednisone and azathioprine, but the medications began to fail, and I was referred to the Myositis Center at Johns Hopkins. There my medication was changed to CellCept, which has been somewhat of a miracle drug for me! I also receive a lot of benefit from continued physical therapy and staying as physically active as possible.

My original rheumatologist has since retired, and I continue to receive care at JHU. My biggest triggers for flares these days are bad weather, bad dietary practices, stress, illness, and fatigue. I have learned to gracefully accept help—even to ask for it—and to use assistive devices when I need them to avoid injury.

After my initial diagnosis, I was really discouraged. I had always been very active, but with myositis I struggled to even move or care for myself. At the time of my diagnosis, I was a nurse, mom, wife, volunteer EMT/firefighter, and avid equestrian. No longer able to ride my horse or serve my community, I started to spiral.

We were told twelve years ago that anti-SRP can be very resistant to treatment and that mortality could be very high. With more research, we now know that more and more people are living successfully with IMNM for many years after diagnosis. This has prompted me to participate in studies with both JHU and the NIH. Knowledge is power, and the more knowledge we give to physicians and scientists the more it benefits all of us.

At the 2016 TMA patient conference, we met Sue Maillard, a physical therapist from the UK. She is also an avid equestrian and was really enthusiastic about the benefit that equine assisted therapy could provide for those who live with myositis. Although I could not ride or pursue the same equestrian events I once did, I started driving a carriage and now compete in many events with my horse, Kiss. It is amazing how he has adapted his behavior to accommodate my balance and weakness issues. He is really tuned in to my disability. We have been successful in the sport of combined driving, which is very challenging for someone with myositis.

I try to serve as an advocate for other equestrians with physical challenges and promote accessibility within the sport by sharing my story with unaffected equestrians and officials who notice my differences. I’ve been given dispensations from the event-sanctioning organizations for adaptive equipment that makes it possible for me to compete, and I help others obtain the same assistance. At times, I even decorate my carriage or scooter with zebra accessories to represent rare diseases!

I had to stop working as a nurse in a large hospital system, which became far too taxing for me. I am now working happily in case management with a smaller homecare company. I was not ready to stop working emotionally when it became physically challenging, and I hope to continue for as long as possible.

As a person with a disability, I can also be a huge advocate for others with disabling conditions when they struggle to communicate with their insurance carriers, physicians, and care partners. I also distribute TMA’s Myositis 101 booklets to many physician offices in my work territory. A quick diagnosis has been my greatest gift in this battle, and it is my goal to give this gift to as many others as possible.

I became TMA’s New Jersey Myositis Support Group Leader in 2024, and I am really grateful for all of the members who have reached out, attended meetings, and shared their stories. We meet bimonthly via zoom and share our struggles and triumphs. The support we gain from each other has been very helpful!

I am blessed that my husband, John, has been a huge part of helping me win my myositis battle. He finds ways to help me stay active and assists The Myositis Association by participating in meetings and speaking with other care partners and volunteers at the patient conference every year. We have attended a total of seven conferences since my diagnosis and look forward to attending every year. Meeting other myositis warriors and hearing their stories really boosts my spirit and resolve to keep fighting.
 

Please help TMA provide the kind of support and education that was so important to Colleen and John by making a tax deductible donation now.

The post My journey with IMNM appeared first on The Myositis Association.

Her treatment was not going very well because of allergies and other complications. At a motorcycle charity event benefiting juvenile myositis, she found out about The Myositis Association (TMA) and its local support group, led by super-volunteer Marianne Moyer. “It was life changing to meet people who could relate to what I was going through,” Donna said.

Will you help people like Donna find hope and know they are not alone?

Donna found high-quality information about myositis and treatment best-practices, as well as connections to top-notch physicians. She also made good friends. “This group is the greatest community you can imagine. We regularly got together outside of meetings to have lunch and have fun.”

Fabio, the Italian actor and fashion model, had lost a good friend to myositis, and Donna and her group invited him to participate in a motorcycle charity event for TMA. Fabio, Donna, and her support group had a wonderful time raising awareness about myositis. “TMA makes everyone feel like your next-door neighbor, even the best physicians in the country,” Donna said. “I love this community!”

Please make a gift today to help TMA raise awareness and support people like Donna. 

Your generosity makes all the difference this Myositis Awareness Month!

TMA hopes to raise $70,000 for Myositis Awareness Month – please help us reach our goal!

The post This is the greatest community you can imagine appeared first on The Myositis Association.

Even though she is a medical professional and diagnoses others every day, Jen Swisher still suffered dismissals and misdiagnoses in her two-year journey to a dermatomyositis diagnosis. She wrote this article about her odyssey for Myositis Awareness Month (MAM) in 2024 for the Hippo Education website. This year, Jen will serve as one of several medical professionals on a TMA webinar during MAM 2025. 

Here is an excerpt from her article.

Navigating a chronic illness as a patient and provider is both a burden and a blessing. There are so many facets in which being a physician assistant (PA) has served to my benefit as a patient. The average diagnostic delay for dermatomyositis has been quoted between two to five years. I was able to recognize and piecemeal my symptoms for a more expedited diagnosis and was able to backdoor myself into rheumatology to start treatment right away. This has increased my empathy toward patients who are in a purgatory of sorts with vague symptoms and falling through the cracks of obtaining diagnostic testing, referrals, and insurance hurdles. 

I’m able to contribute ideas to my multidisciplinary team when it comes to my treatment regimen. When new symptoms arise, I have a decent barometer of when I need to be evaluated and when I can let things ride. However, the burden comes with knowing too much, not being able to turn off my PA brain, and increased anxiety when it comes to risk-benefit analysis. Advocacy, empathy, and open-mindedness are paramount in fostering meaningful patient-provider relationships and facilitating optimal outcomes. 

To read more about Jen’s story, check out her blog on the Hippo Education website. 

Jen Swisher, PA-C is a board-certified emergency medicine physician assistant and clinical assistant professor at Chapman University’s PA Program. Don’t miss Bridging Experience and Expertise: Myositis Patients as Healthcare Providers on May 29 at 6:30 ET. Register here.

Please help TMA provide the kind of support and education that was so important to Jen by making a tax deductible donation now.

The post The burden and blessing of being both patient and provider  appeared first on The Myositis Association.