How long will the needs last?

• Duchenne Muscular Dystrophy
• Becker Muscular Dystrophy
• Limb Girdle Muscular Dystrophy
• Facioscapulohumeral muscular dystrophy
• Emery-Dreifuss Muscular Dystrophy
• Congenital Muscular dystrophy (CMD) with protein laminin-A2 (LAMA2) deficiency – the condition is also known as MDC1A, classic CMD or merosin deficient CMD
• Ullrich Congenital Muscular Dystrophy
• Walker-Warburg Syndrome

This guidance covers -:

• Duchenne Muscular Dystrophy
• Becker Type Muscular Dystrophy
• Limb Girdle Type Muscular Dystrophy
• Facioscapulohumeral Muscular Dystrophy
• Muscular Dystrophy Other/Type not known -: e.g.
• Congenital Muscular dystrophy (CMD) with protein laminin-A2 (LAMA2) deficiency/ MDC1A/Classic CMD/Merosin Deficient CMD
• Emery-Dreifuss Muscular Dystrophy
• Ullrich Congenital Muscular Dystrophy
• Walker-Warburg Syndrome

Duchenne Muscular Dystrophy

There is no treatment that prevents worsening muscular weakness. Both care and mobility needs increase over time. Indefinite awards are recommended in all cases.

Note: All of these children will eventually become wheelchair reliant and totally dependent on others for self care.

Becker Muscular Dystrophy

No needs are anticipated in the typical case during childhood.

Any award for care needs related to therapy should be reviewed at age 12 – the age when most children could be expected substantially to manage their own therapy. Children aged 12 and over will be able to manage their therapy for themselves unless learning difficulties or other problems prevent them from doing so. Indefinite awards are recommended for mobility problems.

Limb Girdle Muscular Dystrophy

If needs are identified solely related to therapy – for example putting on splints or having physiotherapy then review these awards at age as this is the age when a child could be expected substantially to manage their own therapy.

If care needs or mobility problems related to severe muscle weakness are identified, indefinite awards are recommended. Children aged 12 and over will be able to manage their therapy for themselves unless learning difficulties or other problems prevent them from doing so.

Facioscapulohumeral muscular dystrophy

• Childhood onset or Infantile Facioscapulohumeral muscular dystrophy - Indefinite awards are recommended if needs are identified. Needs are likely to increase with time.

• Mild form or adult onset of Facioscapulohumeral muscular dystrophy - no care or mobility needs would be anticipated during childhood.

Emery-Dreifuss Muscular Dystrophy

If needs are identified solely related to therapy – for example putting on splints or having physiotherapy then review these awards at age 12 as this is the age when a child could be expected substantially to manage their own therapy. Children aged 12 and over will be able to manage their therapy for themselves unless learning difficulties or other problems prevent them from doing so.

If care needs or mobility problems related to severe muscle weakness are identified, indefinite awards are recommended.

Congenital Muscular dystrophy (CMD) with protein laminin-A2 (LAMA2) deficiency – the condition is also known as MDC1A, classic CMD or merosin deficient CMD

If care needs are identified indefinite awards are recommended. These children are very unlikely to be able to walk at 3 years old. Mobility awards should be reviewed at 7 as useful walking ability may be achieved between the ages of 3 and 7. Indefinite awards are recommended if walking ability is lost at any age or if good walking is not achieved by age 7 i.e. the child is only walking a few steps. No improvement is expected.

Ullrich Congenital Muscular Dystrophy

If care needs are identified indefinite awards are recommended. These children are very unlikely to be able to walk at 3 years old. Mobility awards should be reviewed at 7 as useful walking ability may be achieved between the ages of 3 and 7. Indefinite awards are recommended if walking ability is lost at any age or if good walking is not achieved by age 7 i.e. the child is only walking a few steps. No improvement is expected.

Walker-Warburg Syndrome

If care needs are identified indefinite awards are recommended. These children are very unlikely to be able to walk at 3 years old. Mobility awards should be reviewed at 7 as useful walking ability may be achieved between the ages of 3 and 7. Indefinite awards are recommended if walking ability is lost at any age or if good walking is not achieved by age 7 i.e. the child is only walking a few steps. No improvement is expected.

All information must be taken into account when considering the duration of care and mobility needs. The duration of care and mobility needs must be based on the particular circumstances of the child.