Dermatomyositis

In the early months of 1988, I noticed that my daughter was having difficulties with her energy level. She was always a very active child. She started skating when she was only 3 and loved it. She was now nearly 5. We would spend a lot of time outdoors and go on bike rides or for walks, but she would say she was too tired. We knew there was a problem when she didn’t want to walk to the candy store.

It concerned me, so I took her to the doctor several times, and they would say that maybe it was just growing pains. I knew my child, and I continued to search for answers. Finally, our new pediatrician, saw something no one else had. She saw the signs of a disease called Dermatomyositis. She referred us to a dermatologist, who did some blood tests, which turned out to be exactly that.

What is Dermatomyositis? Dermatomyositis is an uncommon inflammatory disease marked by muscle weakness and a distinctive skin rash. The condition can affect adults and children. In adults, dermatomyositis usually occurs in the late 40s to early 60s. In children, it most often appears between 5 and 15 years of age.

Dermatomyositis affects more females than males. There's no cure for dermatomyositis, but periods of symptom improvement can occur. Treatment can help clear the skin rash and help you regain muscle strength and function. The signs and symptoms of dermatomyositis can appear suddenly or develop gradually over time. The most common signs and symptoms include:

 Skin changes. A violet-colored or dusky red rash develops, most commonly on your face, eyelids, knuckles, elbows, knees, chest, and back. The rash, which can be itchy and painful, is often the first sign of dermatomyositis.
 Muscle weakness. Progressive muscle weakness involves the muscles closest to the trunk, such as those in your hips, thighs, shoulders, upper arms, and neck. The weakness affects both the left and right sides of your body and tends to gradually worsen.

The cause of dermatomyositis is unknown, but the disease has much in common with autoimmune disorders, in which your immune system mistakenly attacks your body tissues. Genetic and environmental factors may also play a role.

What scared us the most was that my husband's older sister, died at 12 years old from an unknown disease very similar to this. His parents were devastated when they heard the news, and I think they were reliving the emotions all over again. The only difference was that OUR daughter was going to live!

She became very weak, to the point that she could no longer put on her panties. She was started on Prednisone, a corticosteroid (cortisone-like medicine or steroid). This medication had side effects, but we didn’t have a choice. This was a fatal disease, and we were unwilling to take that chance. She gained weight and just looked like a chubby child. She was also very sensitive to the sun, so I ensured she had sunscreen on and was dressed appropriately when we spent time outdoors.

After she had a muscle biopsy done at the Montreal Children’s Hospital, the results returned positive for Dermatomyositis. She was then put on a strict exercise program and would probably be on Prednisone for a few years. Initially, we would go to the hospital for physiotherapy several times a week. Then, after I knew what kind of exercises to do with her, we continued them at home. I would try to find various ways for her to exercise without realizing it. With hard work, she became stronger and did not fatigue as easily. It was not an easy time for all of us. I had to bring her younger brother to all the appointments, but he was pretty good most of the time.

She was on prednisone medication for nearly two years. She never complained about being unable to do what she wanted, like ride her bike, but I replaced it with other fun stuff, like swimming. She was still able to start kindergarten and was pleased about that.

She is now a healthy 40 year old with 2 children and is very informed about her health. 

Educating kids about their well-being can be simple and fun. It's about empowering them with knowledge to make healthy choices and fostering a positive attitude toward their health.