Krystal Harris has lived with myositis for most of her life, carrying both a dermatomyositis and a juvenile myositis diagnosis. Long before she understood the name of her condition, she felt its presence through early muscle weakness—subtle at first, then unmistakable. Nearly six months passed before she finally received an accurate diagnosis, a moment that marked both clarity and the beginning of a lifelong journey.
Even with the challenges myositis brings, Krystal has never allowed it to define her creativity or her voice. She is a writer at heart—someone who expresses truth, connection, and perseverance through words. Writing not only fuels her passion but also gives her a way to contribute meaningfully to the myositis community.
Myositis affects Krystal every single day. Some days, it feels like it takes more than it gives—making ordinary tasks difficult because of weakness in her legs and trunk. But on other days, she feels the strength that has grown from living with a rare disease: the resilience, the perspective, and the deep understanding of her own capacity. She views her life through many lenses, acknowledging both the hardship and the powerful personal growth.
Through everything, Krystal’s family has been her constant. From her childhood diagnosis to adulthood, they have stood by her side, offering encouragement, stability, and love. Their unwavering support has shaped her strength as much as any treatment or therapy.
Her medical team also plays an essential role in keeping her stable and supported. Krystal is grateful for a rheumatologist who manages her care with expertise and attentiveness, as well as a primary care provider who understands her condition and ensures her overall health is considered with every decision. Together, they help her navigate a disease that is anything but predictable.
One message Krystal wishes every future physician understood is that myositis is not one‑size‑fits‑all. It presents differently in every patient—physically, emotionally, and functionally. There is pain involved, and each person faces their own set of challenges. Compassion, awareness, and individualized care matter.
The Myositis Association has been a meaningful source of support for Krystal, too. Through TMA, she has found community, connection, and reassurance that she is not alone in her experiences. This support has helped her navigate both the everyday realities and the larger emotional journey of living with a rare disease.
Krystal has also become an advocate—not only for herself, but for others walking the same path. She participates in walks, races, and fundraisers, and she writes about the disease to help increase awareness. She supports others living with myositis, using her voice and her experiences to uplift those who may be newly diagnosed or struggling to find their footing. Her advocacy is grounded in empathy and fueled by hope.
Over the years, she has learned that consistency matters. Her simplest but most powerful advice for daily life with myositis is: move in whatever way you can, every day. Movement looks different for everyone, but honoring your body through gentle activity helps maintain strength, function, and connection to oneself.
To others on their own myositis journey, Krystal offers meaningful encouragement:
How we manage our care truly matters. From taking medications, to committing to physical therapy, to checking in on our mental health—it all adds up. Every effort counts, and every step forward, no matter how small, makes a difference.
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Your generosity makes all the difference this Myositis Awareness Month!
