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.
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.
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.
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:
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:
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.
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.
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.
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.
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.
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.
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.
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:
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.
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:
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:
To learn more about learning and behavioural issues in Duchenne, download Parent Project Muscular Dystrophy's resource here.
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.
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.
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.
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.
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.
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).
Despite the challenges of living with Duchenne, it is possible for individuals to have a productive, fulfilling and rewarding life. In fact, more and more young adults with Duchenne are attending university and pursuing rewarding careers.
Here are seven important things you can do to help your child or a child you care for manage Duchenne:
Do what you can to learn about your child’s condition and any medications he or she is prescribed. You and your child can learn more about Duchenne together by getting information from the right places – healthcare professionals, patient organisations and the experiences of other families. You can also download our Duchenne and Me mobile app, which provides you with further medical information, allows you to set appointment and medication reminders, and answers some of the questions you may have about Duchenne.
As well as helping your child deal with the physical limitations of Duchenne, treating him or her the same way, and with the same expectations, as you would a child without Duchenne will help them cope with normal day to day challenges. It is important that children with Duchenne feel emotionally independent, since they, like their peers, want to form their own identity as they grow up.
There are many devices that can allow patients with Duchenne to be more mobile. Canes, crutches, and walkers can offer balance support for those who are unsteady on their feet. Leg braces provide extra support for walking. Standing frames help children stand when they cannot do so alone. There are also many wheelchair options, such as power wheelchairs, that help an individual to get around without the assistance of a caregiver. A physical or occupational therapist can help determine when to introduce these devices.
Incorporate a wheelchair into everyday life – if your child needs to use a wheelchair, work with rehabilitation therapists and their school to find ways to adapt the home and school setting to your child’s needs.
Proper nutrition can improve the overall quality of life for a person living with Duchenne. This is because a healthy, balanced diet is important to help to try and prevent both over- and under-eating – complications which may arise from steroid use and muscle weakness respectively. It is recommended that you speak with a dietician or nutritionist from your care team. They will be able to help develop a nutritional plan customised to your child’s individual needs.
Emphasise what your child can do and let them find ways to do the things they want. Children often find creative ways to participate in activities that interest them.
It’s important to do things that all other families do, so plan time away together for holidays and activities.
Encourage your child to socialise with friends and do things without you from time to time. Participating in afterschool activities and clubs outside of school, such as Scouts, are good ways for children to spend more time with peers.
Duchenne can be hard on parents and families, so it’s important for caregivers to get needed help and support, too.
Make sure you pay attention to your own needs when facing the challenges of looking after a family member who has Duchenne. Here are some ways to help you take on any challenges that you might face.
Caring for someone with a disability can be tiring, both physically and emotionally. Taking breaks is an important way for you to stay healthy – both for yourself and your child. Give yourself permission to take a break from caregiving by scheduling time for yourself.
Stress can use up a lot of energy, leaving you with less of it for your family, social, and work life. Find what works for you to de-stress. That might include speaking to a mental health expert, finding an exercise routine that you like, meditating, or even having a night out!
While life can be busy, do not let it get in the way of making sure that you are eating well, staying active and getting enough sleep.
Make a list of friends, relatives, and other people you can contact. Many people want to be able to help but might not know how. Find a support group or attend a Duchenne event. Connecting with other families and community activities can be a rewarding and fulfilling experience.
Patient organisations can help to find people near you who understand about living with Duchenne. There are a number of these, including, but not limited to:
Download the Duchenne and Me app on your smartphone
The Duchenne and Me app provides you with further information, allows you to set appointment and medication reminders, and answers some of the questions you may have about Duchenne.
The app is not a substitute for medical advice. If you have any questions about your child's condition or treatment, it is always best to consult a healthcare professional.
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