Nemaline Myopathy Support Group


Beginners Guide to Explaining things

Adapted from

Everybody's Different, Nobody’s Perfect

by Dr. Irwin Siegel, for the Muscular Dystrophy Association

Starring Taryn & Keelan

Taryn & Keelan

Everybody’s different1. Everybody’s different, nobody’s perfect. If you look around, you’ll see some kids who don’t have good eyes. They have to wear glasses in order to see. Other kids you know break out in a rash when they eat certain foods (this is called allergic), yet others can’t hear well, don’t talk like every-body else (like those who s-t-u-t-t-e-r), don’t learn as fast as other children, are very thin or very fat, or very short or very tall.

kids2. Everybody’s different, nobody’s perfect. Some kids can’t run as fast as others can. Even though they get where they are going, it takes them more time to get there. Their legs are weak, and they have a hard time jumping, running, climbing stairs, or just keeping up when they are playing with other kids. This is called muscle weakness and it’s caused by a condition called nemaline myopathy.

WHAT 3. WHAT DO WE KNOW ABOUT NEMALINE MYOPATHY? We know that nemaline myopathy affects young children. We know that it makes them weak. We know that it is not in any way their fault they have it, and we know that doctors and scientists are working on a cure so that someday there may be a treatment for nemaline myopathy, and then their weakness will stop. We also know that nemaline myopathy doesn’t change their other abilities.

kid4. Kids with nemaline myopathy can see, and hear, and smell, and taste, and talk, and swallow, and just plain feel as well or even better that other kids. Nemaline myopathy doesn’t hurt, and nemaline myopathy doesn’t change their ability to think, or study, or dream, or plan, or learn, (some of the smartest kids have nemaline myopathy). In fact any number of youngsters with nemaline myopathy are brainy enough to be able to go to university.

So you see, even though kids with nemaline myopathy can’t run as fast as other children, there are other things they can do as well as other kids.

kid playing5. THINGS LIKE WHAT?
Well, thinking things, and things that you do with your hands instead of your feet. Things like reading, or writing, or drawing, or games that you play sitting down.

kid Hobbies like collecting things, or building things (like models), or playing a musical instrument (any one except the tuba; that’s too big and heavy for any kid!).

kids6. Things like doing well in school, which doesn’t at all depend on having strong legs. Things like being a good friend to somebody else.

By now you can see that everybody is different and nobody is perfect. But everybody can also be different by being a bit better. Just because we’re all different, just because each of us has some weak points, doesn’t mean that each of us can’t also have some strong points. That goes for kids with nemaline myopathy too.

kid7. So how about if kids with nemaline myopathy get tired when they are playing? Well, they can sit down and do more quiet activities, and sometimes on field trips with a lot of walking, they can use a wheelchair.

kidThere are other ways kids with nemaline myopathy are helped. Doctors can help them by keeping then as healthy as possible. Physiotherapists can help them by keeping their muscles stretched out and by helping them do exercises.

kids8. How can we help kids with nemaline myopathy?

Well, the best way we can help is by showing that we care about them and like them and that we’re glad to be their friend. That’s how you can help kids with nemaline myopathy.

Remember, we’re all different and none of us are perfect. But, that doesn’t stop us from having fun, being good at certain things, and being friends with others.

Email me if you would like a Microsoft Word version which prints out and can be made into a booklet.

Plant a tree for NMSG


Purchase a tree to dedicate to anyone with NM and help us raise funds for our next convention.

Planting a tree is a great way to mark an occasion or to remember a loved one. I am offering people the opportunity to plant a tree in celebration of a family member or friend with nemaline myopathy and at the same time raise funds for the Nemaline Myopathy Support Group.
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