Spinal Muscular Atrophy Awareness Month

August is Spinal Muscular Atrophy (SMA) Awareness Month. SMA impacts approximately is a genetic condition affecting the nerves that control muscle movement – the motor neurons.

Spinal Muscular Atrophy Australia Inc is Australia’s peak body, supporting Australians living with Spinal Muscular Atrophy and their families for over 15 years. The below information is from their Information Guide that can be downloaded from their website https://smaaustralia.org.au/

SMA Facts

• SMA is the childhood version of Motor Neurone disease.
• 1 in 35 people in Australia unknowingly carry the faulty SMA gene. Being a carrier does not mean you are affected by
  the condition. 
• One in 10,000 live births in Australia are affected by SMA.
• 60-70% of all SMA patients have the most severe form (Type 1). 
• SMA is a physical condition only. Children with SMA have reduced movement.
• There is no known cure for Spinal Muscular Atrophy, however, with recent drug advancements there are some new treatment options for SMA.
• Untreated Babies (Type 1) don’t often reach milestones like sitting or rolling in early infancy, have hypotonia (floppiness),
  progressive weakness and loss of motor function.
• Initially, babies born with SMA appear perfectly normal in every way except they become extremely weak. They are
  bright, alert, interested in people and what’s going on around them. They enjoy music and being played with – just like
  other babies. 
• SMA children’s intelligence is unaffected. Many people with SMA have above average intelligence. Children go to
  mainstream schools, adults work (ie: graphic design, lawyer) and even have children themselves.
• A person is born when BOTH parents are carriers of this gene, neither parent is to blame. There is a 1 in 4 chance of this
  couple having future babies with SMA.
• Children with SMA can be more susceptible to catching colds so washing hands before having contact is very important.
  Avoid visits by anyone suffering a cough / cold or anything contagious.
• Infants / Children / Adults diagnosed with Type 3 and 4 have a full life expectancy, but mobility and dexterity are compromised.
• Those affected by infantile and childhood SMA will rely on a wheelchair for mobility from an early age. Some may develop scoliosis, a curved spine, and require surgical intervention.