Q1: I was diagnosed at age 27 with polymyositis, after a difficult three-year journey to get a diagnosis. My first diagnosis, after a 15 day hospital stay, was psychosomatic illness. I was discharged in a wheelchair, unable to walk, lift my arms, and in severe pain and I was told it was all in my head. Pain was my first symptom followed by muscle weakness and scarring skin rashes on my body and my scalp. I still didn’t have the ‘right” diagnosis though and it wasn’t until about 15 years later that my diagnosis was changed to Dermatomyositis. I am living with what we refer to as refractory dermatomyositis. I have tried all available treatments over the years and none have worked for me longterm.
Q2: Dermatomyositis (DM) is a rare, systemic autoimmune disease that can affect the muscles, heart, lungs, skin, gastrointestinal system, and other organ systems, and can be painful. It can also cause extensive fatigue and cognitive dysfunction (brain fog). DM affects more women than men, and it affects black women even more so. Skin rashes, if present, can help make a diagnosis easier, however, healthcare providers are not trained well enough to see them in people with melanin-rich skin. Interestingly, the name of the disease means muscle and skin inflammation, but some present with only lung disease, or only muscle, or only skin . . . some present with all. With dermatomyositis, they’re many known autoantibodies, each with its own indicators of potential progression, but there is still a lot of work and research to do with these. There is a subset of patients without a known autoantibody, like me. My antibody panel, and even my blood work, do not show any of the findings doctors look for, such as elevated muscle inflammatory markers. Each person with DM, even with the exact same autoantibodies, is different in how they present and how they respond to the off-label medications used to treat it. There is one medication, just recently approved by the FDA to treat dermatomyositis, an IVIG product, which does help some, but not all. Other treatments are often off-label immunosuppressive medications that put us at risk for infections. Over my time living with DM, I have been hospitalized more times than I can count, but I have been in ICU on a ventilator 3 times; twice due to meningitis and encephalitis, and another due to a bowel perforation leading to removal of half of my colon and several feet of intestine, which my doctors believe is likely caused by long term use of corticosteroids. I also experienced a rare side-effect to one medication leading to two strokes in 2016 over a two month period. I feel very lucky and blessed to be alive. Some of the things we have to do to help ourselves with DM: - Protect ourselves from the sun’s UV rays. Some must avoid the sun altogether, including the sun we get inside our homes, while in a car, at work, etc., as the sun’s UV rays can cause flares and rashes. Even fluorescent lighting can cause these exacerbations for some. Wearing sunblock, using umbrellas, wearing UV protected clothing and large brimmed hats, (don’t’ forget the sunglasses) are all helpful. - Exercise is an important treatment for myositis. Keeping our muscles moving, even when it’s painful, is important to prevent muscle atrophy and to keep compensatory muscles to prevent falls. We need to talk to our doctors and PT/OT teams to create a plan so that we don’t injure ourselves or overdo it with exercise. - Using assistive devices like canes, walkers, rollators, wheelchairs. I personally use a wheelchair or scooter for any long distances. At home I use walking sticks to move around. - Cancer screenings are important as DM may be associated with malignancy. - Find support! Myositis can be a very lonely disease and meeting others living with it is so valuable. - Finding a new normal and grieving the losses from DM can be extremely healthy. I have had to grieve over and over again for my losses, like the inability to walk without assistance, having to leave the workforce and go on disability, and many other things. - Advocating for ourselves is a must. Research is evolving in the myositis space and things that once were are no longer. When I was first diagnosed, I was told not to exercise, that it would further damage my muscles. Years later we now know this is not true and that exercise benefits myositis patients. The same is true for pain. There are specialists who still tell patients that pain is not a part of myositis. At MSU we are working to prove that pain is real with myositis so that we can work to manage the pain.
Q3: May is Myositis Awareness Month and we host an entire month of education, added support, fun activities for patients and caregivers, and more. We also host the Myositis Empower Walk, this year on October 2nd, in-person just outside of Las Vegas, and via interactive live stream. This was created in loving memory of Robert “Bob” Landman by his family to support the patient-centered work of Myositis Support and Understanding (MSU). The Landman family wants to prevent other families from having to go it alone. Bob passed away in 2015 due to complications of dermatomyositis, just before MSU was founded. He was misdiagnosed over and over and by the time he was diagnosed with DM, it was too late for any treatments to work. I am so thankful to the Landman family for sharing their journey, from their dads symptoms to diagnosis, and from his death to how they found MSU and found a passion in helping other families affected by myositis. The 3rd Annual Myositis Empower Walk is open to everyone and includes various activities leading up to the walk itself, right from home. This is our signature community-building and fundraising event.
Q4: Just because I can do something today doesn’t mean that I am cured or even feeling well, or that I will be able to do the same thing tomorrow. I often look “healthy” outside of my assistive devices, but inside I am hurting and my muscles are very weak. Dermatomyositis can be an Invisible illness to others so educating and sharing our experiences is important to help them to better understand.