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For parents

What is Barth Syndrome?

Barth syndrome affects the way your child's muscles work. Their muscles run out of energy much more quickly and as a result overall strength and endurance is reduced. This can have a significant impact on gross and fine motor control when growing up. The condition mainly affects boys. Your child is often delayed in their initial motor development and later to start walking. It is important that your child is encouraged to be active so that they develop and learn new skills.

As the muscles run out of energy more quickly many children experience fatigue and have to learn how to manage this as they grow up.  This affects everyone differently but can be extremely debilitating if not managed effectively. This is something that that we can address as a therapy team and put a fatigue management plan in place.

The majority of children with Barth syndrome have very flexible joints. This can impact on gross motor tasks such as balancing and fine motor tasks such as hand writing.

Physiotherapy and Barth Syndrome

All children with Barth syndrome will come to Bristol once a year for clinic to be assessed. The physiotherapy review will allow them to be monitor from year to year. This will include:

  • Strength assessment
  • Joint range review
  • Muscle length testing
  • Spinal and foot posture assessment
  • Walking and running videoed

As well as this assessment it is a chance to discuss any joint or muscular pain that your child may be experiencing. Should your child require regular physiotherapy input they will be referred to their local service with guidance from our physiotherapist.

More information

For more information on Barth Syndrome please see the links below:

http://www.barthsyndrome.org.uk/

https://www.barthsyndrome.org/home

Physiotherapy Contacts

- Olivia Berry - 0117 342 8525