Newswise — After racing to the car one day with his young son, Jim B. started experiencing excruciating pain in his legs and shoulders that didn’t go away, even weeks later. After several trips to the emergency room, countless medical examinations and lab tests, and several misdiagnoses, this man in his 40s was eventually diagnosed with dermatomyositis, a form of the rare, chronic disease of myositis.

Mariah A. was walking up the steps one day when her legs gave out on her and she fell to the ground. She thought she was just dehydrated, but the fatigue and weakness continued, and a few months later the 32 year old was diagnosed with polymyositis, another form of myositis.

For more than a decade, Jim M., a life-long athlete, just thought it was his age that was making his tennis game decline. It wasn’t until last year when his new primary care physician took a closer look at his symptoms and lab studies that this 69-year-old man was diagnosed with the progressive debilitating form of sporadic inclusion body myositis.

May is Myositis Awareness Month, a time when The Myositis Association and its members spread the word about the challenges faced on a daily basis by the more than 50,000 Americans who live with myositis.

  • Myositis is a rare autoimmune disease of the muscles.
  • Myositis includes dermatomyositis, polymyositis, inclusion-body myositis, necrotizing myopathy, and juvenile forms of the disease.
  • Myositis causes severe muscle pain and weakness, difficulty moving and standing, chronic disability, debilitating skin rashes, and other symptoms.
  • Patients face other life-threatening disorders, including interstitial lung disease, antisynthetase syndrome, and a higher risk of cancer and other diseases.
  • Myositis is challenging to diagnose, taking on average more than three-and-a-half years and five doctors to correctly diagnose. This delay can mean the difference—literally—between life and death.  
  • There is no cure for this chronic, disabling condition, but many patients can successfully be treated with anti-inflammatory medications. For those with inclusion body myositis, however, there is no treatment and no cure.

The Myositis Association is an international nonprofit organization committed to support and education for myositis patients and caregivers, increasing awareness of myositis throughout the community, and funding for myositis-related research.

Journalists are invited to seek additional information about myositis at myositis.org. For photos, or to set up an interview with a local patient, myositis medical experts, or TMA’s Executive Director, call 800-821-7356 or email TMA@myositis.org.