RESOURCES
Knowing where to begin after a Duchenne diagnosis can be challenging, but we are here to help.
In this section you will find support materials as well as links to resources and information beyond the Duchenne and You site to help get you started.
1 Like Reach out to the Duchenne Community
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.
Please use the drop down list below to view groups available in your country. Please note this is not an exhaustive list and there may be other organisations not listed here for your country.
Like | EURORDIS | WDO | EAMDA |
|---|---|---|
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| EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare disease in Europe and beyond. | The World Duchenne Organisation (WDO)is an advocacy group managed organisation set up by parents and families of those with Duchenne around the world. | European alliance of Neuromuscular disorders associations (EAMDA) is a nonprofit umbrella organization that connects together neuromuscular disorders associations across European Union. |
| http://www.eurordis.org/ | https://worldduchenne.org/ | http://www.eamda.eu/ |
Videos
COULD IT BE DUCHENNE?
This video explains what some of the common signs of Duchenne – such as developmental delay, walking with a waddling gait, and not keeping up with children of a similar age – may look like in everyday life, and why recognising them as early as possible is so important.
Learn about the different stretches your physiotherapist may have recommended to do at home to help prevent the loss of flexibility that comes with Duchenne.
These videos are provided as examples only and are not intended to replace any advice given by your healthcare professional.
The stretches demonstrated in the videos should only be carried out if deemed suitable by your healthcare professional.
Like
Downloads
Treat DMD Resource
The Guide for Families, can be downloaded from www.treat-nmd.org. This guide contains all the latest information on how Duchenne is diagnosed, how it progresses and the types of support and care you and your family will receive to help you through this journey.
Doctors Discussion Guide
Duchenne timeline infographic
Like Duchenne comics for children
These printable comics have been created to help your child understand what Duchenne is and tell them about the team of people who will help them manage it. The comics include adventures that are easy to understand and can help them navigate their Duchenne journey. The comics have been developed and funded by PTC Therapeutics.
Like Calf muscle/foot and ankle stretch
With the child sitting or lying with their legs out straight, grasp the heel bone in the palm of your hand, and pull it downwards as if trying to make the leg longer. Then, with your other hand or forearm, push the foot upwards towards the shin bone to provide the stretch.
Physiotherapy
Muscles and stretches
When muscles are weak they lose their elasticity (stretchiness) and the joints nearby can become stiff and tight, usually more in one direction than the other. A joint can then become fixed in one position.
Stretches help minimise the development of soft tissue tightening and prevent deformity which can affect mobility and balance and may cause pain.
Always consult your physiotherapist for advice or if you have any questions about stretching, and carry out the stretches as often as recommended by your physiotherapist. They should not be painful for the child – however, they may cause the muscle to feel a bit different and the child may need to become accustomed to this.
This video shows one of the stretches currently recommended for children with Duchenne muscular dystrophy. Your physiotherapist will advise which stretches to do. Do each stretch 5 times on each side, alternating legs/arms and holding each stretch for 10‒20 seconds.
Tips for stretching
- Ask the child to 'join in' or 'help' with the stretch if they can; this gives the child some control, enables the carer to see how much the child can move themselves and can make it easier for the person doing the stretches!
- Make sure the muscles are warmed up before stretching
- Your physiotherapist can show you how far to take each stretch ‒ be careful not to overdo it
- Stretches don’t need to be boring: Having a chat or listening to music together can be good distractions
These videos were filmed at Leeds Children's Hospital with kind permission from the patient, his family and Lindsey Pallant, Senior Physiotherapist, part of the Leeds Neuromuscular Team.
Using a standing wedge
These can be purchased or home made and can be a successful way of providing a prolonged self-stretch. The angle of the wedge should be 10‒20 degrees depending on the range of movement of the ankle. Ask your physiotherapist for advice. Standing for 15‒20 minutes at a table to play can be good way of getting a sustained stretch whilst distracted. Supervision is recommended.
Physiotherapy
Muscles and stretches
When muscles are weak they lose their elasticity (stretchiness) and the joints nearby can become stiff and tight, usually more in one direction than the other. A joint can then become fixed in one position.
Stretches help minimise the development of soft tissue tightening and prevent deformity which can affect mobility and balance and may cause pain.
Always consult your physiotherapist for advice or if you have any questions about stretching, and carry out the stretches as often as recommended by your physiotherapist. They should not be painful for the child – however, they may cause the muscle to feel a bit different and the child may need to become accustomed to this.
This video shows one of the stretches currently recommended for children with Duchenne muscular dystrophy. Your physiotherapist will advise which stretches to do. Do each stretch 5 times on each side, alternating legs/arms and holding each stretch for 10‒20 seconds.
Tips for stretching
- Ask the child to 'join in' or 'help' with the stretch if they can; this gives the child some control, enables the carer to see how much the child can move themselves and can make it easier for the person doing the stretches!
- Make sure the muscles are warmed up before stretching
- Your physiotherapist can show you how far to take each stretch ‒ be careful not to overdo it
- Stretches don’t need to be boring: Having a chat or listening to music together can be good distractions
These videos were filmed at Leeds Children's Hospital with kind permission from the patient, his family and Lindsey Pallant, Senior Physiotherapist, part of the Leeds Neuromuscular Team.
Upwards hip stretch
With the child lying on their tummy, put one hand on their bottom to keep their pelvis still. With the other hand lift the leg up into the air until you feel some resistance (about 30 degrees), then hold.
Physiotherapy
Muscles and stretches
When muscles are weak they lose their elasticity (stretchiness) and the joints nearby can become stiff and tight, usually more in one direction than the other. A joint can then become fixed in one position.
Stretches help minimise the development of soft tissue tightening and prevent deformity which can affect mobility and balance and may cause pain.
Always consult your physiotherapist for advice or if you have any questions about stretching, and carry out the stretches as often as recommended by your physiotherapist. They should not be painful for the child – however, they may cause the muscle to feel a bit different and the child may need to become accustomed to this.
This video shows one of the stretches currently recommended for children with Duchenne muscular dystrophy. Your physiotherapist will advise which stretches to do. Do each stretch 5 times on each side, alternating legs/arms and holding each stretch for 10‒20 seconds.
Tips for stretching
- Ask the child to 'join in' or 'help' with the stretch if they can; this gives the child some control, enables the carer to see how much the child can move themselves and can make it easier for the person doing the stretches!
- Make sure the muscles are warmed up before stretching
- Your physiotherapist can show you how far to take each stretch ‒ be careful not to overdo it
- Stretches don’t need to be boring: Having a chat or listening to music together can be good distractions
These videos were filmed at Leeds Children's Hospital with kind permission from the patient, his family and Lindsey Pallant, Senior Physiotherapist, part of the Leeds Neuromuscular Team.
Sideways hip stretch
With the child lying on their tummy, put one hand on their bottom to keep their pelvis still. With the other hand lift the leg up and then pull it towards you, across the midline towards the other leg.
Physiotherapy
Muscles and stretches
When muscles are weak they lose their elasticity (stretchiness) and the joints nearby can become stiff and tight, usually more in one direction than the other. A joint can then become fixed in one position.
Stretches help minimise the development of soft tissue tightening and prevent deformity which can affect mobility and balance and may cause pain.
Always consult your physiotherapist for advice or if you have any questions about stretching, and carry out the stretches as often as recommended by your physiotherapist. They should not be painful for the child – however, they may cause the muscle to feel a bit different and the child may need to become accustomed to this.
This video shows one of the stretches currently recommended for children with Duchenne muscular dystrophy. Your physiotherapist will advise which stretches to do. Do each stretch 5 times on each side, alternating legs/arms and holding each stretch for 10‒20 seconds.
Tips for stretching
- Ask the child to 'join in' or 'help' with the stretch if they can; this gives the child some control, enables the carer to see how much the child can move themselves and can make it easier for the person doing the stretches!
- Make sure the muscles are warmed up before stretching
- Your physiotherapist can show you how far to take each stretch ‒ be careful not to overdo it
- Stretches don’t need to be boring: Having a chat or listening to music together can be good distractions
These videos were filmed at Leeds Children's Hospital with kind permission from the patient, his family and Lindsey Pallant, Senior Physiotherapist, part of the Leeds Neuromuscular Team.
Knee/hamstring stretch
With the child lying on their back, lift the leg into the air so the hip is at 90 degrees. Ask them to straighten their knee and hold. (Note: hamstrings help stabilise the pelvis in standing and should only be stretched if particularly tight).
Physiotherapy
Muscles and stretches
When muscles are weak they lose their elasticity (stretchiness) and the joints nearby can become stiff and tight, usually more in one direction than the other. A joint can then become fixed in one position.
Stretches help minimise the development of soft tissue tightening and prevent deformity which can affect mobility and balance and may cause pain.
Always consult your physiotherapist for advice or if you have any questions about stretching, and carry out the stretches as often as recommended by your physiotherapist. They should not be painful for the child – however, they may cause the muscle to feel a bit different and the child may need to become accustomed to this.
This video shows one of the stretches currently recommended for children with Duchenne muscular dystrophy. Your physiotherapist will advise which stretches to do. Do each stretch 5 times on each side, alternating legs/arms and holding each stretch for 10‒20 seconds.
Tips for stretching
- Ask the child to 'join in' or 'help' with the stretch if they can; this gives the child some control, enables the carer to see how much the child can move themselves and can make it easier for the person doing the stretches!
- Make sure the muscles are warmed up before stretching
- Your physiotherapist can show you how far to take each stretch ‒ be careful not to overdo it
- Stretches don’t need to be boring: Having a chat or listening to music together can be good distractions
These videos were filmed at Leeds Children's Hospital with kind permission from the patient, his family and Lindsey Pallant, Senior Physiotherapist, part of the Leeds Neuromuscular Team.
Elbow, wrist and hand
Hold the child's arm at the elbow and straighten it. With your other hand hold the child's hand, palm up. Take the wrist back and hold the fingers open.
Physiotherapy
Muscles and stretches
When muscles are weak they lose their elasticity (stretchiness) and the joints nearby can become stiff and tight, usually more in one direction than the other. A joint can then become fixed in one position.
Stretches help minimise the development of soft tissue tightening and prevent deformity which can affect mobility and balance and may cause pain.
Always consult your physiotherapist for advice or if you have any questions about stretching, and carry out the stretches as often as recommended by your physiotherapist. They should not be painful for the child – however, they may cause the muscle to feel a bit different and the child may need to become accustomed to this.
This video shows one of the stretches currently recommended for children with Duchenne muscular dystrophy. Your physiotherapist will advise which stretches to do. Do each stretch 5 times on each side, alternating legs/arms and holding each stretch for 10‒20 seconds.
Tips for stretching
- Ask the child to 'join in' or 'help' with the stretch if they can; this gives the child some control, enables the carer to see how much the child can move themselves and can make it easier for the person doing the stretches!
- Make sure the muscles are warmed up before stretching
- Your physiotherapist can show you how far to take each stretch ‒ be careful not to overdo it
- Stretches don’t need to be boring: Having a chat or listening to music together can be good distractions
These videos were filmed at Leeds Children's Hospital with kind permission from the patient, his family and Lindsey Pallant, Senior Physiotherapist, part of the Leeds Neuromuscular Team.
Wrist and hand self-stretch
This can also be performed with the hands flat against a table top or wall.
Physiotherapy
Muscles and stretches
When muscles are weak they lose their elasticity (stretchiness) and the joints nearby can become stiff and tight, usually more in one direction than the other. A joint can then become fixed in one position.
Stretches help minimise the development of soft tissue tightening and prevent deformity which can affect mobility and balance and may cause pain.
Always consult your physiotherapist for advice or if you have any questions about stretching, and carry out the stretches as often as recommended by your physiotherapist. They should not be painful for the child – however, they may cause the muscle to feel a bit different and the child may need to become accustomed to this.
This video shows one of the stretches currently recommended for children with Duchenne muscular dystrophy. Your physiotherapist will advise which stretches to do. Do each stretch 5 times on each side, alternating legs/arms and holding each stretch for 10‒20 seconds.
Tips for stretching
- Ask the child to 'join in' or 'help' with the stretch if they can; this gives the child some control, enables the carer to see how much the child can move themselves and can make it easier for the person doing the stretches!
- Make sure the muscles are warmed up before stretching
- Your physiotherapist can show you how far to take each stretch ‒ be careful not to overdo it
- Stretches don’t need to be boring: Having a chat or listening to music together can be good distractions
These videos were filmed at Leeds Children's Hospital with kind permission from the patient, his family and Lindsey Pallant, Senior Physiotherapist, part of the Leeds Neuromuscular Team.
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