Support, advice and training can be obtained from
A short 30 sec clip showing you a pupil getting up from the floor in the typical manner for a child with MD. It is called Gower's Sign – well worth …
National Center for Health, Physical Activity and Disability have produced a range video's showing some warm up, aerobic, and stretching exercises- a really useful link to share with PE staff. …
TfL have recently introduced a badge to help Adults and Children who may have difficulty standing/ waiting on all TfL transport. It is designed to be supportive for hidden disabilities and medical conditions. The badges are free- you do notneed…
All students vary, even brothers within the same family can have a very different scale of progression.
A rough quide would be;
This is a support group partner of the Muscular Dystrophy Campaign, they provide help to improve the quality of life for those who have Facioscapulohumeral Muscular Dystrophy (FSH-MD).
Martin Chainani is the regional care advisor in London.
Martin supports children with muscle disease at:
Dubowitz Neuromuscular Centre
Great Ormond Street Hospital
Martin has worked as a regional care advisor since 2002, having come from a background in social work in both Children and Adult Disability. He facilitates the Essex schools network meetings and helps to run several of the MDC Care Events in the South-East region. He has a special interest in raising awareness about the rights of people with muscular dystrophy and other disabilities.
0207 405 9200 ext 0529
Steroids are often given to students who have MD, as they can slow the rate of muscle deterioration.
These can cause side effects and are often given in blocks eg two weeks on and two weeks off.
With most dystrophies such as Duchenne, the condition tends to affect hip and shoulder muscles.
In Myotonic Dystrophy these areas are not affected intially and the initial muscles to be affected are face, neck, hands, feet and forearms
Whizz-Kidz is a charity aiming to provide disabled children and young customised mobility equipment, training, advice and life skills.
This Charity provides equipment to children that is not available on the NHS. They also run Wheelchair training courses/ Mobility centres in Dagenham and Havering.
A free booklet you can download for use with brothers and sisters.
A good starting point and questions answered in a simple age appropriate manner.