What is it like for siblings if their brother or sister has MD?

Lots of siblings get on really well with their brothers and sisters who have MD and enjoy spending time with them. However, other siblings may feel left out as their brothers and sisters with MD need lots of extra attention and care, even though they understand why this is. Siblings might also find it hard if there are carers in the house and not just family. They can feel worried about their brothers and sisters and sad if they can’t join in with things.

What causes MD?

Muscles need many different kinds of proteins to stay healthy. Some of these are in the food we eat, but a lot more are made in our bodies. People with MD don’t make these proteins properly. Without these proteins, the person’s muscles get weaker. MD is something some people are born with, it cannot be caught from someone else. However people may not know about it until they are older.

What does it mean?

Most people with MD look and act just like other children when they’re babies. But as they get older their muscles will start to get weaker, instead of stronger. With Duchenne (a type of MD) this usually starts when they’re between two and six years old. With other types it may be when they are younger, or it may not be until they are adults.

When the muscles in their legs and hips get weaker they will find it hard to run and climb stairs. Later they may find it hard to walk, and many people, especially with Duchenne, will need to use a wheelchair.

People with MD may also find it hard to chew, swallow or breathe as all of these things need muscles.  Sometimes a person with MD may get liquid in their lungs because they cannot cough properly.

What treatment is there?

MD cannot be cured, but there are treatments to help people with MD with their muscles.

• Special exercises help to keep their muscles strong for longer. They will do these exercises for any muscles which are showing signs of getting weak.
• Some medicines, called steroids, can help to keep muscles strong. Unfortunately these usually make them put on weight as well.
• Other exercises help to get the liquid out of their lungs.
• Leg braces or wheelchairs will help them to get around.
• Eventually they may need a hoist to help them get in and out of the wheelchair, and in and out of bed.

In addition to the above, scientists are working all the time, researching treatments which will help people who have Muscular Dystrophy.

Information read and approved by Muscular Dystrophy UK May 2024