Dermatomyositis: Woman’s Death Highlights Need for More Awareness

According to a story from dailymail.co.uk, 59 year old Marcia Ferguson-Roa recently died only a few weeks after unusual symptoms, such as fatigue and ulcers on her head, began to appear. Her doctors realized too late that these were indicators of MDA5 antibody-positive dermatomyositis, a rare disease. Unfortunately, diagnosing dermatomyositis is difficult and it takes an average of five years before the correct one is reached.

About Dermatomyositis

Dermatomyositis is a long-term, inflammatory disorder that primarily affects the skin and muscles. While the mechanism of the disease is an autoimmune response, the cause of dermatomyositis is generally unclear. Common theories suggest that cancer or viral infection could trigger the initial autoimmune response. Up to 30 percent of cases are linked to cancer; the most common types that are associated with dermatomyositis are breast cancer, ovarian cancer, and lung cancer. A portion of cases also appears to be inherited. Symptoms include a skin rash, which can take several forms, such as scaly papules on the finger joints, a v-shape on the chest, around the eyes with swelling, along the back and shoulders, and upper arms and thighs. People with dermatomyositis also experience progressive muscle weakness that begins in the thighs and shoulders, making movement difficult. There is no cure, but symptoms can be treated. To learn more about dermatomyositis, click here.

Marcia’s Story

Marcia’s early symptoms included lethargy and a dry cough, with ulcer-like markings appearing on her skin as the disease progressed. Doctors initially dismissed these concerns as signs of aging. They first appeared in late October, and about a month later she was rushed to the hospital and officially diagnosed with the disease. While staying there, her condition very abruptly worsened during the night; doctors were forced to place her in a medically induced coma to keep her alive.

Unfortunately, a week after diagnosis, Marcia had died, leaving her family, including husband Kris, devastated:

‘I told her I loved her and that we would talk tomorrow. There was no tomorrow.’ – Kris

In many cases, symptoms of dermatomyositis can take months or years to progress, but Marcia’s tragic story demonstrates just how quickly—and severely—they can worsen. Research is ongoing to determine the cause of dermatomyositis and other autoimmune illnesses.