Despite the challenges of living with Duchenne, it is possible to have a productive, creative and fulfilling life. In fact, more and more young adults with Duchenne are attending university, pursuing rewarding careers and having families of their own.
There are plenty of ways to make living with Duchenne that little bit easier for the whole family. Keep reading to find out how.
Read a mother’s personal account of her family’s Duchenne journey.
Never will I forget the sunny day in March, many years ago, when the paediatrician announced: "Your son has a serious, incurable muscle disease." He looked at me cautiously, as if waiting for a reaction. A sign that I understood what he had just said. But there was nothing. My head was fuzzy.
As Duchenne progresses, a variety of lifestyle adjustments and adaptive technologies can help with everyday tasks:
such as ramps, wider doorways and stairlifts, to help make moving around the house as easy as possible
such as braces, walkers, motorised scooters, or wheelchairs, to go places without having to rely on others
include either more accessible and accommodating mainstream schools or special education schools
Telling your friends and family about Duchenne can be daunting, but it is a vital part of the coping process. Once people close to you know, they can serve as great pillars of support.
While there is no right or wrong way to break the news, taking these 5 steps may help make it a little easier:
While it is entirely up to you who you tell – or do not tell – it is usually a good idea to be open and honest with your loved ones about Duchenne.
In general, both adults and children can better deal with a situation if they feel they understand it. That is why it is important to provide the right amount of information about Duchenne and be willing to explain what it all means.
A good rule of thumb is to start by telling people what you feel they will be able to understand and accept.
It is important to stress that Duchenne is nobody’s fault. Explain that Duchenne is a disease that people are born with. Reassure your loved ones that nothing anyone did or did not do could have caused Duchenne.
Explain how Duchenne affects your child or loved one’s everyday life. This could include physical challenges, medical treatments and changes to expect for the future.
Most likely, your friends and family will want to know what they can do to help. Be specific in ways that they can help you. If you do not know what to say, simply tell them that you are grateful for their support.
People may ask questions about Duchenne – it shows that they are interested and concerned about your child or loved one. Questions are an opportunity to deal with any worries the person has together – with information and support.
Try to create an environment where people feel safe asking questions and sharing feelings. This is particularly important for children, as questions enable you to correct misunderstandings and help them express feelings.
You will probably find that different people react to the news in different ways. Some may want lots of information while others will not want to hear about the ‘medical’ side of Duchenne. Some may find it difficult to discuss feelings while others may not be able to stop. Some may want to surround themselves with people while others may wish to be alone.
Communicate what feels right for you and/or your loved one, and listen to what others tell you works for them.
Most children with Duchenne can attend pre-school and primary school without any problems. However, as the condition progresses, some adjustments may need to be made.
It is important that you contact the school and provide them with as much information as you can about Duchenne. That way the teachers can:
School teaches children independence, provides opportunities to learn and helps them meet friends – skills that will help shape their lives. There is no reason why children with Duchenne should not have aspirations for the future. In fact, many young adults with Duchenne attend university, have careers, get married and have children.
Request a kick-off meeting
with the members of staff who will be involved in your loved one’s education
any concerns, special needs or ideas you may have
about Duchenne and the treatments/therapies your loved one is receiving
The needs of a student with Duchenne may be very different from those of other children. Be sure to tell the teacher whether your child or loved one:
If your child or loved one has Duchenne, the thought of sending them to school can be daunting. You may worry about them falling, being bullied or going through the unnecessary stress of exams and other assignments.
While it is perfectly normal for parents, caregivers, teachers and even the child with Duchenne to have fears around school, it is important to understand that they are not always based on reality. Separating fact from fiction can make a huge difference in helping your child or loved one get the best educational experience possible.
While you may think that a Duchenne diagnosis means attending special education, if possible children with Duchenne should 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 or loved one may be your best bet.
Having Duchenne does not mean that your child or loved one should be excluded from participating in school activities.
Openly discuss your child or loved one's capabilities and limitations with the school. Together, you can decide whether any modifications or special adjustments can be made. For example, building ramps for wheelchairs, providing more time for exams, or finding games that do not require physical strength.
Research has 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 or loved one's teacher has had a student with Duchenne in their class. Be prepared to openly discuss your child or loved one'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 the student CANNOT do, focus on what the student CAN do. Work with your child or loved one teacher to set realistic goals and focus on the student’s strengths. You could also talk to the school about developing an individualised education programme (IEP).
Browse the life hacks below for practical tips, tricks and creative ways to make everyday life with Duchenne simpler and more enjoyable!
|Mince hard-to-chew food in a blender for easy swallowing||Use straws to make drinking out of cups easier||Use adapted cutlery to make mealtimes easier||Make healthy, soft food dips for easier swallowing|
|Muscle weakness can make chewing and swallowing difficult. Try mincing meat, salads and hard fruit in food processor to a pâté-like consistency.||There is no need to lift up cups and bottles if you add a straw!||Weakness in the fingers and hands can make griping cutlery difficult. Strap-on or contoured grip cutlery can make eating easier.||Homemade hummus and guacamole are some great-tasting, simple to make, healthy snack ideas that do not require any chewing.|
|Mince hard-to-chew food in a blender for easy swallowing|
|Muscle weakness can make chewing and swallowing difficult. Try mincing meat, salads and hard fruit in food processor to a pâté-like consistency.|
|Use straws to make drinking out of cups easier|
|There’s no need to lift up cups and bottles if you add a straw!|
|Use adapted cutlery to make mealtimes easier|
|Weakness in the fingers and hands can make griping cutlery difficult. Strap-on or contoured grip cutlery can make eating easier.|
|Make healthy, soft food dips for easier swallowing|
|Homemade hummus and guacamole are some great-tasting, simple to make, healthy snack ideas that don’t require any chewing.|
|Install grab bars to make getting around easier||Convert a ground floor room into an accessible bedroom||Put corner protectors on sharp-edged furniture||Get a pressure-relief mattress for sounder sleep|
|Grab bars are an inexpensive way to make getting around the home easier – whether that is getting into and out of a wheelchair, getting into the shower, going up the stairs or getting out of bed.||This eliminates the need for climbing stairs, which can be difficult as muscles weaken.||Corner protectors help prevent cuts and bruises from falls, which may become more common as Duchenne progresses.||Muscle weakness can make it more difficult to find a comfortable sleeping position.
A pressure-relief mattress may provide greater support and comfort.
|Install grab bars to make getting around easier|
|Grab bars are an inexpensive way to make getting around the home easier – whether that is getting into and out of a wheelchair, getting into the shower, going up the stairs or getting out of bed.|
|Convert a ground floor room into an accessible bedroom|
|This eliminates the need for climbing stairs, which can be difficult as muscles weaken.|
|Put corner protectors on sharp-edged furniture|
|Corner protectors help prevent cuts and bruises from falls, which may become more common as Duchenne progresses.|
|Get a pressure-relief mattress for sounder sleep|
|A pressure-relief mattress may provide greater support and comfort.|
Muscle weakness can make it more difficult to find a comfortable sleeping position.
|Use a gripping aid for tablets and keyboards||Put paintbrushes through a tennis ball for better grip||Speech-to-text apps or programs can document what you say|
|Muscle weakness can make using a smartphone, tablet or computer more difficult. Moldable gripping aid shapes can aid touchscreen use and typing.||Limited grip strength can make activities like painting challenging, but there is no need to miss out on art class! Try poking paintbrushes through an old tennis ball for an easier grip.||As writing and typing becomes more challenging, you might want to download a speech-to-text app, which ‘types’ what you say.|
|Use a gripping aid for tablets and keyboards|
|Muscle weakness can make using a smartphone, tablet or computer more difficult. Moldable gripping aid shapes can aid touchscreen use and typing.|
|Put paintbrushes through a tennis ball for better grip|
|Limited grip strength can make activities like painting challenging, but there’s no need to miss out on art class! Try poking paintbrushes through an old tennis ball for an easier grip.|
|Speech-to-text apps or programs can document what you say|
|As writing and typing becomes more challenging, you might want to download a speech-to-text app, which ‘types’ what you say.|
|Get a hair-washing tray for easier and more comfortable hair washing in the sink||Install a walk-in bathtub for easier bathing||Get a shower chair or stool to stay safe in the bathroom||Toilet safety rails provide extra stability at a low cost|
|Quicker, less messy and more comfortable, hair washing trays are an inexpensive way to modify your bathroom.||While they are one of the more expensive home modifications, walk-in bathtubs make getting in and out of the bath a whole lot simpler.||Shower chairs or stools can make getting cleaned up a lot safer and easier.||Adjustable, removable bars that fit right around the toilet can make going to the toilet that bit more convenient.|
|Get a hair-washing tray for easier and more comfortable hair washing in the sink|
|Quicker, less messy and more comfortable, hair washing trays are an inexpensive way to modify your bathroom.|
|Install a walk-in bathtub for easier bathing|
|While they are one of the more expensive home modifications, walk-in bathtubs make getting in and out of the bath a whole lot simpler.|
|Get a shower chair or stool to stay safe in the bathroom|
|Shower chairs or stools can make getting cleaned up a lot safer and easier.|
|Toilet safety rails provide extra stability at a low cost|
|Adjustable, removable bars that fit right around the toilet can make going to the toilet that bit more convenient.|
|Prepare for difficult conversations||Make a ‘self-care’ list||Schedule regular time off each week|
|Get clear on what is important to you before difficult or serious conversations by taking notes – whether it is with family members, friends or healthcare professionals.||Keep a list of activities that make you feel good on those days you need a pick-me-up. Examples could be having a massage, listening to music, going outside or seeing a friend.||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 loved one.|
|Prepare for difficult conversations|
|Get clear on what’s important to you before difficult or serious conversations by taking notes – whether it's with family members, friends or healthcare professionals|
|Make a ‘self-care’ list|
|Keep a list of activities that make you feel good on those days you need a pick-me-up. Examples could be having a massage, listening to music, going outside or seeing a friend.|
|Schedule regular time off each week|
|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 loved one.|
|Make the most of doctor’s appointments by coming prepared with a list of questions||Keep a ‘medical folder’ of important information||Ask for copies of doctor’s notes so you can look up information at home|
|Keep a list of any questions you may have about your child or loved one’s care so you can voice any concerns when the time comes.||Keeping all forms and medical information together makes it easier to find the information you need, when you need it.||That way you can pay extra attention to what the doctor is saying instead of worrying about remembering medical conditions or test results.|
|Make the most of doctor’s appointments by coming prepared with a list of questions|
|Keep a list of any questions you may have about your child or loved one’s care so you can voice any concerns when the time comes.|
|Keep a ‘medical folder’ of important information|
|Keeping all forms and medical information together makes it easier to find the information you need, when you need it.|
|Ask for copies of doctor’s notes so you can look up information at home|
|That way you can pay extra attention to what the doctor is saying instead of worrying about remembering medical conditions or test results.|
A Duchenne diagnosis can turn your world upside down, but you do not have to go through it alone. Family, friends, professionals and online communities can all serve as great pillars of support and comfort to fall back on in difficult times.
Informal support networks
people who help out in a practical way and are there for you when you need them, like friends and family members
Formal support networks
support from healthcare professionals, patient groups and professional organisations
Having a strong network of supportive people that you can trust and fall back on means you can:
It can be easy – albeit unintentionally – to give less time to your friends and other loved ones after a Duchenne diagnosis. You may find yourself busy taking care of your family, your priorities may change, or you may feel too emotionally drained to see other people.
However, making time to maintain your support network is critical. Try following these 5 steps to help strengthen your relationships with the people who matter:
Make an effort to catch up with family and friends on a regular basis. This does not always have to be face-to-face – a simple phone call or email will suffice.
Life hack: if you are short on time, try writing out a ‘template’ email that contains all your family news. Later, you can personalise the content depending on who you are writing to.
It can be hard to ask for or accept support, but loved ones, friends, co-workers and neighbours often want to help. Let them know what you need, as well as how and when they can help.
Life hack: make a tick list of things that need doing. If someone asks to help, show them the list and let them choose what they can take off your hands.
Meeting with family and friends is a great way of taking a break and clearing your head. That is why it is important to make it a priority and not just an afterthought when you have free time.
Life hack: try using your phone or calendar to make social event planning part of your schedule. This way, your phone will automatically send you reminders, which will encourage you to make plans.
Try to be open and honest about the way you are feeling and what you are going through. While it can be scary to say what is on your mind, it is also a pathway to deeper connection with others.
It is important to remind your loved ones how important they are to you and how much you value their support. Make sure to express how you feel, and do things that show how well you know and care for them.
Life hack: when showing your gratitude, make sure to focus on the other person. Do something that they would perceive as caring. This could be treating them to lunch or a quick cup of coffee, writing a thank you note, giving them an inspirational book or simply asking how they are.
You are not alone facing the challenges of Duchenne. Within your country there will be a number of patient organisations and groups that you can go to for more information and support relevant to your local country.
Never will I forget the sunny day in March, many years ago, when the paediatrician announced: “Your son has a serious, malignant, incurable muscle disease.” He looked at me cautiously, as if waiting for a reaction. A sign that I understood what he had just said.
But there was nothing. My head was fuzzy.
l sat there numb, and had no idea how to start getting my head around this word. I just couldn’t grasp it. But two thoughts crossed my mind.
Was this man off his head giving me such a terrifying diagnosis after just watching my son stand up once? At the same time the thought came: of course, he’s right, and I knew it!
Despite all the reassurance from doctors, physiotherapists and other people, I had always suspected that something was wrong. If I were not so shocked, I might have felt a fleeting sense of satisfaction. Finally, I was no longer the neurotic mother who was always imagining things.
A dark time followed that fateful March day. For days I felt like I was in freefall. Not once was I able to remember the words ‘muscular dystrophy’, because my consciousness refused to accept this diagnosis. All I could think about was that my barely five-year-old, innocent, blonde, curly-haired boy would die of this disease. That thought ripped my heart out.
Why my child? As hard as it was, I kept asking myself the same question. I quarrelled with God and the world – especially with God. What had I done to deserve this? What had my child done? I looked for answers in religion, read books on coping strategies, and looked for advice from other parents of ‘special’ children, gradually learning to give up meaningless and difficult questions.
Naturally, my little boy did not suspect what was going on, and his older sister went about her life. That was maybe my salvation: I was forced to carry on as normally as possible. After a few weeks this hard time ended and I began to deal with the illness. I spoke to the nursery, primary school, friends and neighbours. I turned to the church and I researched self-help groups. Sometimes I had to swallow a lot but the more I talked about the disease, the easier it became for me. I decided that we would have a good life despite this devastating diagnosis. The idea of life expectancy faded into the background and disappeared for many years. I stopped searching for research and concentrated on life instead.
Important decisions had to be made again and again. Which school is suitable? How would he get on there? Does he need a teaching assistant, or could he manage without? How will I deal with the topic of school trips? Will he be bullied? Should he take steroids or not? How can I tell him why he is so different from his friends? How do I find the right words?
When will he need a wheelchair? How can we deal with the situation as a family? Will I be able to do justice to his sister? Many sleepless nights came and went, and it was always my son who gave me courage and strength.
Naturally our life was very different to those of our family, neighbours and friends, simply because we thought differently.
My son went to the only local primary school along with his friends, unfortunately on a hill. Sending him to the nearest special school would certainly have made many things easier, but I didn’t feel he belonged to that world yet. The children in his class were totally at ease with him and the school went out of their way to make school trips manageable. He felt fine, was almost always in good spirits and carried on like a normal person. The moments when he was sad or stressed were rare and never lasted long.
As he got older he started to think about his situation. He kept his thoughts to himself. Text books say you should only answer the questions your child asks. But he did not ask questions. He seemed to sort things out on his own. Without any fuss, he just seemed to accept his fate. I was worried because for a long time I thought he needed to know what was the matter with him. But I found out many years later that he had in fact known for a long time, but just didn’t talk about it. Still, I felt it was time to put my son in touch with other children with Duchenne. So, in the hot summer of the football world championship in Germany, we drove to a rehabilitation clinic in Weserbergland for the first time.
I was surprised to discover how relaxed and happy the mood was between the parents and children; even families with older boys were having fun. I was even more surprised that we became part of a big family. To this day, our rehabilitation stays in Hoxter are one of the highlights of the year.
And so the years went by. There were several surgeries and long hospital stays. The need for financial assistance steadily increased, there were many battles with health insurance, and there was always the ongoing worry about his health, his muscle loss and loss of function, ventilation and heart medication.
I watched his playmates progressing while he went backwards, and that hurt a lot. On the other hand, I learned to live in the present – a skill I had always wanted. His illness always gave me the time to grow into it and keep up. I grew into it and made my peace with Duchenne.
Today my son is a smart, polite and, above all, compassionate person who always makes me laugh with his dry humour. He is a gift: my wonderful Duchenne son!
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