AS in adulthood - Angelman Syndrome (2024)

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 thisvideo.

With age, most people withAngelman Syndromebecome 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 inadulthood. With age, some mobility may be lost and joints may stiffen up. People with Angelman Syndromeusuallyhave 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 in72% 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
AS in adulthood - Angelman Syndrome (2024)

FAQs

AS in adulthood - Angelman Syndrome? ›

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.

What happens to adults with Angelman syndrome? ›

Around 68% of adults with Angelman are able to communicate their basic needs. Sleep disturbances and epilepsy, which affect about 80% of Angelmen children, usually improve over the years. In adults, seizures occur in about 41% of cases, although 72% of those with the disease still report poor sleep.

What is the life expectancy of a person with Angelman syndrome? ›

A person with Angelman syndrome will have a near-normal life expectancy, but they will need support throughout their life.

What activities are good for adults with Angelman syndrome? ›

Tactile – body brushing with a surgical scrubbing brush, having a massage, playing with play-dough. Vestibular – being on a swing, riding a trike. Oro-motor – using a vibrating toothbrush, “chewlery”, applying scented lip-balm. Being involved in heavy lifting or pushing work may also be beneficial.

What does a typical day look like for someone with Angelman syndrome? ›

Children with Angelman syndrome often move quickly from one activity to another, have a short attention span, and keep their hands or a toy in their mouths. Hyperactivity often decreases with age. Medicine often isn't needed. Sleep troubles.

Does Angelman syndrome get worse over time? ›

Angelman syndrome itself does not get worse over time. However, how it affects a person may be different at different points in the person's life.

How old is the oldest person with Angelman syndrome? ›

AT 76, Stockton Centre resident Marea Bourke is believed to be the oldest person in the world with a rare genetic syndrome known as Angelman syndrome.

What famous person has Angelman syndrome? ›

James Padraig Farrell. Farrell and model Kim Bordenave welcomed the actor's first child, James, on Sept. 12, 2003. In 2007, Farrell shared that his son, now 19, was diagnosed with Angelman syndrome, per People.

What is the IQ of someone with Angelman syndrome? ›

While the diagnostic values for this remain contentious, the IQ of adults with Angelman syndrome is usually well below 70 for cognitive ability (meaning the capacity to comprehend and reason). Generally speaking, scores below 70 represent some degree of learning or developmental disability.

Why are people with Angelman syndrome happy? ›

Researchers do not fully understand why patients with Angelman syndrome are so prone to laughing. They had suggested that laughter may be related to seizures (gelastic seizures). However, no evidence supports this idea.

Can people with Angelman syndrome live alone? ›

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.

What gender is most affected by Angelman syndrome? ›

Angelman syndrome affects males and females in equal numbers. The prevalence of Angelman syndrome is estimated to be approximately 1 in 12,000-20,000 people in the general population. However, many cases may go undiagnosed making it difficult to determine the disorder's prevalence in the general population.

Can people with Angelman syndrome be sad? ›

Around 14% of children and 18% of adults with Angelman syndrome show levels of positive emotion that may be considered 'excessively high'. In the research study that looked at this, no individuals showed negative emotion, however this is not to say that it does not occur in a few individuals.

What are 3 interesting facts about Angelman syndrome? ›

Seizures often begin between 2 and 3 years of age. Speech impairment is pronounced, with little to no use of words. Individuals with this syndrome often display hyperactivity, small head size, sleep disorders, and movement and balance disorders that can cause severe functional deficits.

What race is Angelman syndrome most common in? ›

Angelman syndrome cases have been reported in different countries and among people of varying ethnic origins. The majority of cases in North America have been found in people of Caucasian descent.

What are the Behavioural problems of Angelman syndrome? ›

Behaviours that Challenge in Angelman Syndrome

They include self-injury, aggression, shouting, screaming and others. The term 'behaviours that challenge' does not mean that there is something about the individual themselves that is challenging.

What limitations do people with Angelman syndrome have? ›

Most people with AS will have significant developmental delays, speech limitations, and motor problems. They still will understand much of what is said. They also often learn to communicate non-verbally and with communication devices. People with AS appear to have normal life spans.

Can people with Angelman have kids? ›

Women with Angelman syndrome are fertile, and there is a case in the literature of a woman with Angelman syndrome becoming pregnant with a child with the disease. It is, therefore, important to provide support about sexuality to women with Angelman syndrome.

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