“Muscular Dystrophy is a genetic disorder that gradually weakens the body’s muscles. It’s caused by incorrect or missing genetic information that prevents the body from making the proteins needed to build and maintain healthy muscles.”

(The Nemours Foundation, 1995-2009)

There are 30 types of Muscular Dystrophy. In some types, muscle problems start when the person is very young. With other types, symptoms occur not until the person is a grown up.

The different types of Muscular Dystrophy affect different sets of muscles and result in different degrees if muscle weakness.

This form of childhood dystrophy is the most common and the most severe. If affects 1 out of every 3500 boys only.

Symptoms for this type begin to appear around age 5 as the pelvic muscles begin to weaken. By age 12, the majority of children will be unable to walk and made to use a wheelchair.

Lifespan for this type is about 20years.

This form is less common and progresses slowly. Like Duchenne, Becker also affects boys (1 in 30 000).

Symptoms for this type begin during teen years and include weakness in the pelvic muscles, then shoulders and back.

Lifespan for this type can be long and active, and can be without a wheelchair.

This form affects both girls and boys equally. Symptoms begin around the ages of 8 and 15 years old. It

affects pelvic, shoulders and back muscles. The severity of this dystrophy varies as some may need to

use a wheelchair and some only experience mild weakness.

Stumbling Waddling Have difficulty going up stairs Toe walking Struggle to get up from sitting position Hard time pushing things Hypotonia (floppiness) Poor head control Tightness in ankles, hips, knees and elbows Sometimes, dislocated hips A sway-back (Lordosis)

(The Nemours Foundation 1995-2009) (East and Evans, 2006, pg. 58)

Enlarged calf muscles (calf pseudohypertrophy) Restriction of Joint Motion e.g. Joint contractures Scoliosis Difficulty breathing Heart problems Early Death

(The Nemours Foundation 1995-2009)

There is no cure for Muscular Dystrophy yet. Doctors, specialists and other professionals are working and researching to improve muscle and joint function and possibly slow muscle deterioration.

Diagnosis before the age of 2/3 (before symptoms are very obvious) is possible through:› A blood test› A muscular biopsy› Electromyography (EMG)

(Better Health Channel, 2008)

Physical Therapy and Bracing to improve flexibility

Power wheelchairs and scooters to improve mobility

Support breathing with a ventilator and respiratory care

Prednisone Spinal Fusion Robotics to help your child perform routine daily

tasks Crutches, walkers, leg braces to help them walk Specially trained dog to assist in carrying books

and toys. Also assists with opening doors(The Nemours Foundation, 1995-2009)

Children with Muscular Dystrophy have difficulty walking or running fast, climbing stairs and have poor head control.

The majority are unable to walk by ages 8-11 Delayed motor milestones are apparent e.g.

Crawling, walking Loses the ability to do things such as walk, sit

upright, breath easily, and move arms and hands

(East and Evans, 2006, pg 58)

Intellectual Disabilities only affect a minority of boys with Duchenne type Muscular Dystrophy, but are more common than in other children. The intellect is not affected in Becker type Muscular Dystrophy.

(Better Health Channel, 2008)

Although most children with Duchenne Muscular Dystrophy have average intelligence, about one-third of them experience learning disabilities and a small number have mental retardation.

(The Nemours Foundation, 1995-2009)

Children with Duchenne Muscular Dystrophy are at increased risk for the three types of learning disabilities: Dyslexia, Dyscalculia, Dysgraphia

(Poysky, 2007)

Duchenne and Becker Muscular Dystrophy have unexpectedly high levels of social and communication difficulties

Poor social interactions – poor peer relationships

Communication problems

(Poysky, 2007)

There is evidence of some boys with Duchenne Muscular Dystrophy who are at risk of experiencing depression

Study results indicated that a minority (approx. 17%) are at an increased risk of psychological problems

(Poysky, 2007)

Limit obstructions in hallways and rooms Support bars on walls and in bathrooms More accessible seating in various places Classrooms/centre layout is carpeted/soft padded

floors Make full use of help and advice from

physiotherapists, occupational therapists and other professionals who can advise you on equipment and adaptations

Children with Muscular Dystrophy like to do the same things and be treated just like other children, although they need some special attention. Modifications include:

Ensure regular exercise and outdoor play Encourage a buddy system and plenty group time Make use of computers Incorporate choice Language and music times is age/stage appropriate Encourage consistent routines Incorporate breathing exercises such as blowing into

a tube to make a ball go up.(The Nemours Foundation 1995-2009) (East and Evans, 2006, pg 58)

http://www.youtube.com/watch?v=0_ecVd3kNtQ

Talk to parents, and the child Plan ahead – as the pace of deterioration can

vary greatly Have a positive attitude Suggest after school clubs Provide information Communication books Diaries fro health care professionals Meeting with the child’s parents and selected

staff Respect confidentiality(East and Evans, 2006, pg 58)

General Practitioner (family doctor) Specialist Doctors for Muscular Dystrophy A team of medical specialists including:

› Neurologist› Orthopaedist› Pulmonologist› Physical and occupational therapist› Nurse practitioner› Cardiologist› Registered dietician› Social worker› Summer camps(The Nemours Foundation 1995-2009)

Muscular Dystrophy Association Fairy Meadow Physiotherapy and Hydrotherapy

Centre 2/102-110 Prices Highway Fairy Meadow NSW 2519 (02) 42851725

City Physiotherapy. 123 Church Street Wollongong NSW 2500 (02) 42261015

The Nemours Foundation, 1995-2009, Kids Health Muscular Dystrophy, <http://kidshealth.org/kid/health_problems/bone/muscular_dystrophy.html> (updated October 2008, first accessed 13th August 2009)

East. V and Evan. L, 2006, At a Glance: A Practical Guide to Children’s Special Needs, 2nd Edition, Continuum International Publishing Group, London

Better Health Channel, 2008, Muscular Dystrophy, http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.Nsf/pages/Muscular_Dystrophy_Duchenne_and_Becker?openDocument (updated June 2008, first accessed 26th August, 2009)

James Poysky, 2007, Behaviour Patterns in Duchenne Muscular Dystrophy http://www.parentprojectmd.org/site/DocServer/DuchenneBehaviourPatternsNMD.pdf?docID=4481 (no update, first accessed 26th August, 2009).