Dermatomyositis (Juvenile)

It was Christmas Eve when I was hospitalized and diagnosed with juvenile dermatomyositis (JDM), a rare autoimmune disease that affects approximately 5,000 children and adolescents in the United States. During my impromptu holiday sojourn, I remember tinsel hanging from the door of the hospital room and my mom sleeping on a cot beside me while [...]

It was Christmas Eve when I was hospitalized and diagnosed with juvenile dermatomyositis (JDM), a rare autoimmune disease that affects approximately 5,000 children and adolescents in the United States. During my impromptu holiday sojourn, I remember tinsel hanging from the door of the hospital room and my mom sleeping on a cot beside me while [...]

I’m sitting here with a faint smile across my lips. My daughter is laying across my lap, her hand cupping the perfect point of her chin. We’re resting and waiting as the medicine drip, drip, drips into her veins. Once a month we come to the hospital’s infusion center for her to get a steroid [...]

I met my close mom friend for coffee. My 2-year-old daughter was in tow, and her 18-month-old son was her debonair date. We rioted the local hipster coffee shop, our toddlers climbing on the benches and shouting, as we collected skeptical glances from the Chapman University students with their laptops, sipping macchiatos and balancing oversized [...]

Many celebrities have been coming out about their chronic diseases and how it’s been affecting them in their daily lives. From Lady Gaga to Selena Gomez, these people have given me the courage to speak out to loved ones and acquaintances about how my body actually feels at that moment. How it’s not that people [...]

Editor’s note: The following is based on an individual’s experience. Please consult your doctor before beginning new exercise or training programs. At the age of 15 I was told I wouldn’t have a normal life again. At the age of 23 I ran my first half-marathon. In spring 2008, I was diagnosed with an idiopathic [...]

I look at my friend through eyes propped open by caffeine. Her hair balanced in a messy bun atop her head like always. I was so grateful to steal a moment away from the hospital room to see her sweet, familiar face and to enjoy this ritual. We sip the same coffee blends as we [...]

Harlie Valdez shares her experiences with the rare disease juvenile dermatomyositis as part of our partnership with Rare & Undiagnosed Network RUN.Part 1: Part 2:

For over two decades now, the word “myositis” has been all too familiar in my life. In December 1993, my life changed forever when I was given the diagnosis of juvenile dermatomyositis (JDM), the childhood form of the disease, at nine years of age. I had been sick for at least two years at the time, [...]