People with Angelman Syndrome have a normal life expectancy providing that there are no medical complications. They can live a happy and active lifestyle if they have a good support network. Many adults with AS live independent of their families in their own homes with support or in a residential environment. Adults with AS usually attend day centre activities after finishing school or college. They remain socially active and will continue to learn and thrive enjoying regular activities such as going to the pub, exercising and taking part in community events.

Transition to adulthood can be a complicated time for all involved. The transition process starts at 14 and ends at 25 years of age. It involves many meetings and decision making to come up with a suitable plan for the future of the young adult. We asked some of our parents to describe their feelings around transition in this video.

With age, most people with Angelman Syndrome become less hyperactive and the sleeping problems tend to improve. People with AS will have intellectual disability and limited speech throughout their life. In later childhood, the seizures usually improve, although they may return in adulthood. With age, some mobility may be lost and joints may stiffen up. People with Angelman Syndrome usually have good general health, are often able to improve their communication and acquire new skills throughout their lives.

Active Seizures

  • Present in 41% of individuals

Sleep Dysfunction

  • Prevalence of poor sleep in adults remains quite high, occuring in 72% of individuals

Significant Constipation

  • Present in 85% of individuals

Overweight / Obesity

  • Present in 32% of individuals, with obesity disproportionately affecting women

Scoliosis

  • Affects 50% of individuals with an average age of diagnosis at 12 years old
  • 24% of those diagnosed with scoliosis required surgery, an intervention disproportionately affecting men

Walking

  • 68% are able to walk independently

Speaking

  • 13% are able to speak 5 or more words

Self-Injurious Behavior

  • 52% of individuals exhibit self-injurious behavior