Coping with a Myositis Disease

Myositis refers to inflammation of the muscles ("MYO" means muscle and "ITIS" means inflammation). Myositis is a mystery disease in several diseases:

Polymyositis (PM) means inflammation of many muscles.

Dermatomyositis (DM) means inflammation of many muscles and skin

Inclusion Body Myositis (IBM) means inflammation of many muscles with "Inclusion" (abnormal protein deposits) and vacoules (holes) in the muscle cells and fibers. Virtually 95% of physicians are unlearned about this chronic, lifetime muscle disorder. So little information is given to the patients after they have finally been diagnosed, but offered no further information about the future expectations might be.

The four Myositis diseases have individual case reports from patients with the diseases, telling how the disease affected them, their families, their working and the dark future that no physician had told them would happen.

The Myositis patients are telling their stories to help newly diagnosed Myositis individuals learn more about the disease, what to expect. Several Neurologists who have read the stories have said the book will be a great teacher to the medical profession because the stories give a glimpse into the daily life, the philosophy on the mind and inner workings of the patient's body; whereas the medical profession can only ascertain what they learn through diagnostic procedures.

James R. Kilpatrick was diagnosed with IBM August 1991 in Dallas at the age of 59. Because there is so little knowledge about Myositis, he sought patients and medical professionsals as he explained his project of wanting to have such a book as Coping with a Myositis Disease. His response and encouragement were overwhelming.

Mr. Kilpatrick has earned four university degrees from Ohio and one from a Louisiana university; has been a certified Hospice counselor to AIDS patients for 13 years before the Myositis disease was diagnosed. At time of diagnosis, he was Comptroller of seven 501(c)(3) non profit-organizations. He is/was a professional organist, on TV and radio for 25 consecutive years.

The Kilpatricks began a Myositis Support Group in 1996; now one of the largest such groups in the country. They have been married 47 years, have a married daughter, son-in-law, and two mid-teen grandchildren in the Dallas area. The Kilpatricks make their home in Athens, Texas.