Explaining what Multiple Sclerosis is may be the biggest problem that people with the illness have. At least, along with the tripping, numbness and forgetfulness, it may be among the most persistent problems those who have it face.
It’s not an easy thing to do, and that’s why the National Multiple Sclerosis Society has a flyer that helps explain it to children through a coloring book. And, WebMD has a way to gently talk about it to your children that isn’t intrusive, and may even help you understand the illness.
I know that I didn’t even know what a “myelin sheath” was before I got the disease, and it’s not easy to explain. Very simply, it’s a disease that affects the myelin, which is fatty protective tissue around the nerves. Your own body attacks that area, and strips it away, causing pain and disruptions in your body.
I like to take a piece of electrical wire and a pocket knife to strip away the outer coating to show the metal wiring inside, and how how when it’s stripped away, the nerves are raw.
The name comes from many, or multiple, skleros, which is Greek for saying “hard.” If someone has many nerves that have this hard area around the nerves, then that’s evidence of the disease.
It’s not catching, it’s not fatal. And children need to know that. But, it can cause pain. The antibodies produced in the thymus, lymph nodes, appendix, etc. all end up attacking myelin in a specific area of the body, such as the back, the legs, one arm, or all over.
The National MS Society describes it as:
“A chronic, often disabling disease that attacks the central nervous system, which is made up of the brain, spinal cord, and optic nerves. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another. Today, new treatments and advances in research are giving new hope to people affected by the disease.”
An amazing group, CHUMS (Children’s Hope for Understanding MS) offers simple explanations that kids could understand: “MS is the most common central nervous system disease among young adults in the United States. More than 350,000 people in the United States have MS and about 200 new cases are diagnosed each week according to the National Multiple Sclerosis Society.”
The National MS Society explains, “People with MS may notice that they are having trouble doing everyday things… putting on their socks, making a sandwich, or walking the dog. Their bodies may feel ‘funny”‘or different. These troubles and discomforts are called “symptoms.” MS symptoms can be very mild, very serious, or somewhere in between. They can come and go. Sometimes the symptoms disappear for a few days, weeks or months, and then come back again. This is why we say MS is unpredictable.”
The government definition isn’t as confusing as you would expect, either. The National Institute of Health points out: Multiple Sclerosis affects woman more than men, and the disorder most commonly begins between ages 20 and 40, but can be seen at any age. “MS is caused by damage to the myelin sheath, the protective covering that surrounds nerve cells. When this nerve covering is damaged, nerve impulses are slowed down or stopped.”
Ultimately, the explanations can be confusing, but they aren’t contradictory. Understanding and explaining it is the first step to dealing with it. (See and share the video for what it feels like as well.)