Becker’s Dystrophy

Description

The muscular dystrophies (MDs) are a group of inherited disorders characterised by progressive muscle wasting and weakness.
Becker's muscular dystrophy (BMD) is similar to the more common muscular dystrophy, known as Duchenne's muscular dystrophy (DMD), but the clinical course is milder.
Becker's dystrophy affects 1 in 17,000 live births.

Fact sheets

Training / Help

Please contact the following services for further support;

Newbridge Outreach
Physiotherapy
Occupational therapy
Medical team supporting student and family

Videos

Screenshot for video: Tomcat adapted trikes

Exercise routine for teenagers with Spina Bifida-useful for all wheelchair children

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. …

Stretches for students in a wheelchair before PE

A variety of stretches for beginner wheelchair basketball players, but could be usd with students who are in a wheelchair. Always ensure you seek advice for student's physiotherapist if you …

Learning Aids

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…

Frequently Asked Questions

How do you manage Becker's Muscular Dystrophy?
- Exercise programmes and physiotherapy.
- Recent evidence suggests that exercise training is beneficial.
- Muscle cramps may be helped by night splints, massage or compression treatment using air-filled boots.
- Vitamin D and calcium for bone health and avoid obesity
- After walking ability is lost - wheelchairs and other aids.
- Psychological support and employment advice.
What are the signs of Becker's Dystrophy?
- As with DMD, there is muscle wasting and weakness which is mainly proximal.
- Generally, walking difficulties begin after age 16.
- Female carriers of BMD may be affected, either by some degree of muscle weakness and/or by cardiomyopathy.
What are the educational implications for students who have Becker's Dystrophy?
- In Primary School the main considerations are around mobility and independence.
- In PE pupils should be encouraged to access as many physical activities as possible to use the full range of movements for as long as possible.
- Pupils will tire easily—monitor fatigue / look for patterns in school week.
- Because of increasing weakness in the shoulder girdle muscles the child should not be pulled up by the hands or from under the arms.
- Support for handwriting—consider scribe / access to ICT
What are the later symptoms of Becker's dystrophy?
- Muscle weakness, this affects proximal muscles of the limbs mainly.
- In teenage years or twenties, people can experience difficulty in climbing stairs, fast walking and lifting heavy objects.
- BMD patients can walk independently until age 16 or later (compared to students who have Duchenne MD, who generally cannot walk beyond age 12).
- Walking ability is lost usually at age 40-60, but sometimes earlier, around age 20-30
- Wasting of proximal muscles; hypertrophy of others, particularly the calf muscles.
What are the early symptoms of Becker's Dystrophy?
The average age at diagnosis is 11 years, but there is a wide age range.

Symptoms usually begin in childhood.

The clinical severity varies from person to person.

The early symptoms can be;
- Delayed walking (sometimes) / Muscle cramps on exercise.
- Most BMD children are not 'athletic' and may struggle with school sports.

Family Resources

Whizz Kids

Website:

http://www.whizz-kidz.org.uk/

Description

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.

Joseph Patrick Trust (JPT)

Phone:

020 7803 4814

Email:

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Website:

http://www.musculardystrophyuk.org/get-the-right-care-and-support/equipment-grants/jpt-grants/

Description

The Joseph Patrick Trust (JPT) is the welfare trust of the Muscular Dystrophy Campaign and provides part-funding towards the cost of equipment for children and adults with muscle disease.
The JPT funds equipment, such as powered wheelchairs, adapted computers and electric beds, which promotes mobility and independence.

Contact a family

Website:: http://www.cafamily.org.uk/
Description: A UK wide charity providing advice, information and support to parents of all disabled children.

Outreach Services

Newbridge Outreach Service

Phone:

0208 503 8773

Email:

.(JavaScript must be enabled to view this email address)

Website:

http://www.redbridgeserc.org

Description

Newbridge Outreach Service provides support to pupils with a range of learning, medical and physical difficulties.

http://www.newbridge.redbridge.sch.uk/introduction2

physical disability
physical disability with associated learning/communication difficulties
dyspraxia and related specific learning difficulties
perceptual difficulties
fine and gross motor skill development
difficulties with handwriting and alternative forms of recording.

Support is provided by

providing assessments
setting targets for learning / writing individual programmes
modify curriculum content and delivery
identify and use specialist resources
helping to provide support and advice to parents
delivering INSET for all staff, other agencies and parents

Request for support should come from the school the pupil is attending or another Agency involved.

Occupational Therapy

Phone:: 020 8924 6111
Website:: http://www.redbridge.gov.uk/
Description: The Occupational Therapy Team are now based at Redbridge Child Development Centre (0 -19yrs), previously known as The Kenwood Centre in Barkingside.

S.E.R.C

Phone:

0208 503 8773

Email:

.(JavaScript must be enabled to view this email address)

Website:

http://www.redbridgeserc.org

Description

Age range of pupils they support: 4- 19 yrs

Students they support:

SERC completes individual assessments for pupils who have complex needs or specific physical disability ( see SERC criteria form on home page)
SERC are happy to offer wider advice to support whole school SEN Inclusive ICT provision.
Training and support is free to all Redbridge Schools.

Range of support offered:

This centre based at Newbridge School, provides advice and support in the use of Information Technology with pupils who have special educational needs or a physical/ sensory disability.
S.E.R.C provides individual assessments of ICT needs of individual needs of pupils with SEN, in both mainstream and special schools.
Training for teachers and support staff who work with pupils with SEN.
Support and advice to parents/ carers of children who have SEN.

Address: S.E.R.C, Newbridge School, 258 Barley Lane, Ilford, Essex, IG38XS