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Rett Syndrome Awareness Month

Posted on 25/10/2018

October is national Retts Syndrome Awareness Month and although the disorder is rare, as a communication disability charity we see many people with the condition approaching us for speech aids. Effecting communication, mobility, cognitive abilities and gastric processes, this neurological and developmental disorder has no cure and require a lifetime of care for the individual.

What Causes Rett Syndrome?

Caused by a mutation in the Gene’s this disorder affects the way the brain develops causing a progressive inability to use muscles. The condition occurs almost exclusively in girls as they are the only gender with the gene the condition is caused by. Most babies with Rett syndrome seem to develop normally at first, but after about 6 months of age, they lose skills they previously had — such as the ability to crawl, walk, communicate or use their hands. This continues and worsens into adulthood which is why many families seek speech aids for their loved ones with the disorder.

What are the Symptoms?

  • Slowed growth
  • Loss of normal movement and coordination
  • Loss of communication abilities
  • Abnormal hand movements
  • Unusual eye movements
  • Breathing problems
  • Agitation and irritability
  • Abnormal behaviours such as hair grasping, odd facial expression & long bouts of laughter
  • Cognitive disabilities
  • Seizures
  • Irregular heartbeat
  • Pain
  • Fragile bones

What is the Most Suitable Communication Aid?

As all those with the condition have varying degrees of symptoms so the most speech aid is usually person specific. However, as most people with Retts Syndrome tend to lose their mobility after a period of time, using switch operated devices such as lightwriters and button operated devices like grid pads, can be challenging to use. Speech and language therapists working alongside those with Retts Syndrome often select eye gaze technologies for their patients, as even they can account for lack of head control and eye movement.