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When someone has Phelan-McDermid Syndrome (PMS) it means that they have learning difficulties, problems communicating and will struggle to move their arms and legs. They may also have challenging behaviour.

What is it like for siblings if their brother or sister has Phelan-McDermid Syndrome (PMS)?

Lots of siblings have really good relationships with their brothers and sisters who have PMS. However, other siblings may feel left out because their brother or sister with PMS needs lots of time and attention from a parent. They may feel frightened if their brother or sister has challenging behaviour and worry in case they get hurt. They may also feel guilty that their brother or sister has PMS but they don’t.

What causes PMS?

PMS is a genetic condition that someone is born with. It can be passed from a parent to a child before they are born but it cannot be caught like a cold. In some families it will affect some children but not others.

What does it mean?

PMS affects children in different ways. They may have low muscle tone or floppy arms and legs, delayed speech or autism or ‘autistic like’ behaviour. They may have teeth grinding, not be able to feel pain or have challenging behaviour.

What treatment is there?

There is no cure for PMS. It is a lifelong condition but a number of the conditions caused by it can be treated.

Different treatments might help such as:

  • physiotherapy
  • occupational therapy
  • speech and language therapy
  • music therapy
  • psychological therapy

Not everyone with PMS syndrome will need every therapy or treatment.