LIVING WELL WITH DUCHENNE MUSCULAR DYSTROPHY

Duchenne not only affects your child but it can have an effect on the whole family – physically, mentally and socially.

In addition to disease management strategies to help you care for your child, there is a lot you can do to help the whole family better cope with the condition. Keep reading to find out how.

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Get the support you need
Take a look at the Duchenne support groups available to you here. If you feel you need additional professional help then speak with your GP and s/he may be able to refer you for counselling support.
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HOW DO I TELL OTHERS ABOUT MY CHILD’S CONDITION?

There is a chance that those around you may not have heard of Duchenne. People often do not know how to react to disability and they can be afraid of the unknown.

By teaching family, friends, and teachers about Duchenne and the way it progresses, those around you and your child can feel more comfortable. It may also be helpful for you to help others become more aware of the condition.

Talking to children

When talking to children, such as your child’s siblings or friends, teach them about Duchenne at a level that they can understand and be prepared for how they may be affected. Educate them about how Duchenne progresses and how it will be treated. Encourage children to treat your child as normally as possible.

Please contact your healthcare professional about our range of patient support materials.

Talking to a teacher

Depending on age, your child will have different needs that require different physical and academic accommodations in the classroom. Here are three tips to help you effectively communicate with teachers and other school staff:

  1. Request a kick-off meeting at the start of the school year to discuss your child’s needs and limitations with their teacher and other members of staff involved in your child’s education
  2. Provide your child’s teacher with information about Duchenne
  3. Have an open and candid conversation with your child’s teacher so that together you can work to accommodate your child’s physical and developmental needs. Explain what symptoms your child is experiencing as well as what symptoms are likely to arise in the future
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PREPARING FOR THE CONVERSATION

It can be difficult to come to terms with a diagnosis of Duchenne. Family, friends and others may ask you lots of questions about the condition. Below you will find some common questions about Duchenne and simple ways to answer them:

What is Duchenne muscular dystrophy?

Duchenne muscular dystrophy (also called DMD or just Duchenne) is a genetic disorder that causes muscle weakness. It is progressive, which means that it gets worse over time.

How many people have Duchenne muscular dystrophy?

Duchenne is a rare condition, affecting around 1 in 3,600‒6,000 boys and 1 in 50 million girls. There are about 2,500 people living with Duchenne in the UK and over 100 in Ireland.

What causes Duchenne muscular dystrophy?

Duchenne is caused by a mutation (a defect or flaw) in the gene that makes dystrophin, a protein that keeps muscles working properly. As a result, the body is unable to produce enough dystrophin and muscles cannot function or repair themselves properly.

What are the symptoms of Duchenne muscular dystrophy?

The progression and severity of symptoms of Duchenne differ from patient to patient. The earliest signs of Duchenne are delays in certain activities such as sitting, walking and talking. Other signs and symptoms of Duchenne can include difficulty getting up off the floor (also called Gowers’ sign), large calf muscles, frequent falls, a waddling gait and problems with crawling, running and climbing.

Is there a cure for Duchenne muscular dystrophy?

While there is no cure for Duchenne at the present time, there are a variety of treatments and care options available. Patients who get specialist care early have a better chance of keeping muscles strong and working for longer. This can help delay complications so individuals with Duchenne can live more independently and longer than ever before.

How is Duchenne muscular dystrophy treated?

The main focus is on keeping muscles working as well as possible for as long as possible and on managing the symptoms of Duchenne. Medicines can help slow down muscle damage and treat the symptoms of Duchenne, while supportive care treats the complications of Duchenne and helps improve a person’s quality of life.

Is Duchenne muscular dystrophy contagious?

Duchenne is not contagious or infectious. It is a genetic disease, which means that people are born with the condition.

There are lots of resources available that may help you during difficult conversations with friends and family. The organisations listed here can provide useful resources that may help.

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HOW CAN I HELP MY CHILD WITH DUCHENNE SUCCEED AT SCHOOL?

School is important for children with Duchenne. It teaches them independence, provides opportunities to learn and helps them meet friends – skills that will help shape their lives. Most children with Duchenne can attend pre-school and primary school without any problems, but as the condition progresses, some adjustments may need to be made, such as:

It is important that you contact the school and provide them with as much information as you can about Duchenne. You may want to speak to your specialist centre about ways they can help to educate the staff at your child’s school. Your regional care adviser or specialist nurse may come to the school to talk to teachers and students about Duchenne to help them better understand the condition. That way you can work with teachers and other school staff to accommodate your child’s physical and developmental needs. Examples might include:

  • Finding ways to demonstrate academic understanding besides written work
  • Giving your child extra time to get from class to class
  • Finding ways for your child to participate in class trips and gym class
  • Asking the teacher if you can speak to the class when your child is not there
  • Offering extra support for any learning or behavioural problems
  • Being flexible with attendance, for example in the case of doctor’s appointments

For further advice on how to help teachers understand Duchenne and meet your child’s needs in the classroom, refer them to Parent Project Muscular Dystrophy's resource for teachers here.

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DEALING WITH LEARNING AND BEHAVIOUR PROBLEMS

Learning and behavioural difficulties tend to be more common in children with Duchenne, although not every child with Duchenne will experience them. They are thought to arise as a result of a combination of factors, such as a lack of dystrophin protein which can impact on brain function, side effects of certain medications used to treat Duchenne, or psychological problems that arise from dealing with a Duchenne diagnosis.

Children with Duchenne may also be at a greater risk of the following conditions compared with their peers:

  • Attention deficit hyperactivity disorder (ADHD)
  • Autistic spectrum disorder (ASD)
  • Sensory processing disorder (SPD)
  • Obsessive-compulsive disorder (OCD)

If you have any concerns about learning and behavioural issues, it is important that you talk to your child’s specialist doctor. He or she will be able to refer your child to the appropriate health professional, who will perform an assessment and may recommend a number of different interventions, such as medication, counselling, therapy and social skills training. They may also recommend additional support services at school.

You should also contact the school to organise any extra support for your child that may be needed. Additional services for children with behavioural problems or learning difficulties can include:

  • Speech and language therapy
  • Specialised academic instruction
  • Extra teaching support

To learn more about learning and behavioural issues in Duchenne, download Parent Project Muscular Dystrophy's resource here.

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COMMON ASSUMPTIONS TO RETHINK ABOUT DUCHENNE AT SCHOOL

The thought of sending a child with Duchenne to school can be daunting. You may worry about them falling, being bullied or going through the unnecessary stress of exams and other assignments.

However, while it is perfectly normal to question the importance of school for children with a progressive condition such as Duchenne, it is important to realise that attending school can provide children with a range of experiences and opportunities that may otherwise not be available to them.

Assumption
Because my child has Duchenne, they will be better off in a special education school

Reality

While you may think that a Duchenne diagnosis means attending special education, experts say otherwise. It is actually recommended that children with Duchenne attend mainstream schools. This is so children with the condition can experience and learn from the 'real world'. However, keep in mind that as the disease progresses, an alternative or specialised school that can support the needs of your child may be best.

Assumption
Because my child has Duchenne, they should not participate in school activities or trips

Reality

Having Duchenne does not mean that your child should be excluded from participating in school activities. Openly discuss your child's capabilities and limitations with the school. Together, you can decide whether any modifications or special adjustments can be made, such as building ramps for wheelchairs, providing more time for exams, or finding games that do not require continued and strenuous physical activity.

Assumption
My child will be teased or bullied about their condition

Reality

Studies have shown that children are less likely to tease and more likely to defend a student with Duchenne when they understand the condition. Talk to the school about how to raise the topic of Duchenne with other students.

Assumption
The teacher will know exactly what to do

Reality

This may or may not be the first time your child's teacher has had a student with Duchenne in their class. Be prepared to openly discuss your child's condition and provide teachers with guidance and information about Duchenne.

Assumption
My child will not be able to keep up with their classmates

Reality

While it is true that children with Duchenne may need assistance with physical activities and help to address learning disabilities, they can still follow the classroom curriculum and participate in class activities.

Rather than focusing on the disability and what your child CAN’T do, focus on what they CAN do. Work with your child’s teacher to set realistic goals and focus on their strengths. You could also talk to the school about developing an individualised education programme (IEP).

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