Suffering from incurable rheumatism at age six: "A full day of school is a party."

Barcelona"No!" answers six-year-old Rosa embarrassedly when her mother, Blanca Flaquer, asks if she wants to say anything to the journalists interviewing her. Immediately afterward, she grabs a toy dog and runs off to show it to her four-year-old sister, Neus. In the hospital playroom, the two of them jump up and down, waiting for the strangers talking to their mother to leave. A few months ago, such a scene seemed unthinkable. Rosa was weak, had great difficulty moving, and her parents had to carry her on their shoulders to perform everyday activities like going to the bathroom. "She spent the entire summer in bed," Blanca recalls.

One morning, Rosa woke up unable to get out of bed; her muscles wouldn't respond. She had been seeing various specialists for weeks because she had developed spots on her skin, she was increasingly tired, and all the doctors agreed it was a virus. But no one knew which one. Her parents rushed her to the emergency room, where they ruled out a viral illness and ran more tests, this time taking into account muscle involvement. Finally, she was diagnosed with dermatomyositis, a chronic, autoimmune rheumatic disease that is very rare in children.

"It's an ultra-rare disease that affects between two and four children per million," explains Mireia López, an assistant physician in the rheumatology department of the Vall d'Hebron pediatric unit, where Rosa has been treated since her diagnosis. The main symptoms are skin lesions reminiscent of a common viral infection, making it difficult to diagnose if the disease is unknown, as well as muscle weakness. As dermatomyositis progresses, the muscle weakness can completely limit the child, who may end up bedridden and require hospitalization, as has been the case with Rosa.

Rehabilitation and Treatments

For the moment, this disease is incurable. "There is no specific treatment that can be administered to make the disease disappear. Hopefully. Much research is being done to try to make this happen, but there is no definitive curative treatment," laments López. However, patients have alternatives and, like Rosa, can regain mobility and their lives, always under the watchful eye of healthcare professionals and regular check-ups in the hospital. There are treatments that allow the disease to be "as inactive as possible and allow the child to return to a normal life," the expert specifies.

Being an autoimmune disease, drugs are used to control the immune system if the disease is too active, as in the case of dermatomyositis, which causes the skin and muscles to become inflamed. They are called immunosuppressants and they slow down this immune system reaction so that the child can regain their life, although the disease is chronic and they must live with it. "We're trying to fine-tune treatments so they can be more targeted at the specific targets that cause the disease," López explains about the current state of research into the disease.

Until definitive care arrives, however, Rosa will be able to live normally like the rest of her friends. Aside from treatment, Blanca explains that they've also done a lot of rehabilitation work and breathing exercises to help her daughter regain her strength. This combination has allowed her so far this year to return to being a six-year-old with the vitality typical of children her age. "She's happy, she goes to school, and she values it very much. Before, she could hardly ever go, and for her, having a full day was like a party," she says, relieved, as both girls continue playing.