What is JDM?

JDM is an autoimmune disease affecting approximately only 3.1 out of one million children in the United States. Severely weakened body muscles and skin rash are the primary symptoms of JDM. JDM affects every child differently… some children experience a mild form of the disease, while others follow a more severe and extremely debilitating course. JDM causes a variety of debilitating symptoms including muscle weakness & pain, severe fatigue, rashes, swallowing & digestive difficulties, lung & heart problems, vasculitic ulcers, calcinosis, and muscular contractures. Left untreated, JDM is a life threatening condition.

Genesis of the Disease

The immune system is a group of cells that normally protects the body from infection. In autoimmune diseases like JDM, however, once these cells turn on their infection-fighting process, they cannot turn it off. This process therefore damages the body instead of protecting it.

One way the immune system cells fight infection is through inflammation. But when the cells cannot turn off the inflammation process, tissues are damaged. In JDM sufferers, the skin rash and weak muscles are caused by vasculitis, an inflammation in the blood vessels that lie under the skin and in the muscles. Since blood vessels run throughout the human body, JDM can also affect many other body systems such as the digestive tract, lungs and heart.

What causes JDM?

The autoimmune disease initially presents itself when an invasive “trigger” causes the body’s immune system to overreact. It is believed that this trigger could be a virus, a vaccine or an environmental hazard.

What is the treatment for JDM?

There is no cure for JDM yet, but there are treatment options to help manage the symptoms. Early and aggressive treatment is usually the best predictor of a better outcome of this disease.

IV corticosteroids (Solumedrol) are usually the first line of treatment for JDM. This is oftentimes coupled with high dose oral Prednisone, another corticosteroid. Since the side effects of corticosteroids can be very troublesome, Methotrexate (a chemotherapy drug) is usually introduced early to allow for tapering of the corticosteroids.

Other common treatments include Cyclosporine and Intravenous Immunoglobulin (IVIG), Cellcept (chemotherapy), Enbrel and Remicade.

These medications all have their own side effects, but the most common ones for Prednisone are: increased appetite and weight gain, rounded face, mood changes, high blood pressure, stretch marks, fragile bones and bone damage, cataracts and slow growth.

What is the prognosis?

Some children may experience remission, while others will battle JDM their entire life, and complications from this disease can prove fatal. Medication can help to alleviate the symptoms of Juvenile Myositis, but there is no known cure.

Who is Dr. Pachman?

Dr. Lauren Pachman has been a physician since 1966 and has worked at Children’s Memorial Hospital since 1971. She has served as department head for immunology and rheumatology and continues to do extensive research for a cure for JDM. She is one of only a very few specialists that focus on JDM research in the world. Her patients come from many different nations to receive her treatment.
Why does Macy have to go all the way to Chicago for treatment?

After receiving the diagnosis of this extremely rare disease, we knew we had to get Macy to the best medical treatment available to provide her with the best chance to conquer the effects of JDM. In John’s research he located two renowned doctors in the U.S. We chose Dr. Pachman due to her length of research and lasting dedication to finding a cure. She is the foremost in her field and we are blessed that Macy is able to be under her care.