Skip to main content
Donate

Angelman Syndrome Life Expectancy: Understanding the Facts and Considerations

Angelman syndrome (AS) is a rare neurogenetic disorder that affects about one in 15,000 people. It is caused by a genetic difference on chromosome 15, which leads to a lack of functional UBE3A protein in the brain. The absence of UBE3A in the brain results in balance issues, motor impairments, and seizures. While many individuals with AS have limited or no verbal speech, they often use other methods to communicate. 

Health and Development in Angelman Syndrome

Individuals living with Angelman syndrome are typically healthy at birth, with no birth defects or significant issues during infancy. However, developmental delays may become apparent within the first year of life.  The absence of UBE3A in the brain does not seem to affect the function of a person’s other organs, like their heart or kidneys.  

Does Angelman Syndrome Affect Life Expectancy?

A common question from families is, "Does Angelman syndrome affect life expectancy?"  Although researchers have not yet performed a long-term, large study or a population-based study to calculate an exact average, we personally know many individuals living with AS who live a typical lifespan.  Adults living with AS may experience common health conditions that any individual can experience, but AS is not known to increase the risk for additional specific health issues. For example, heart, kidney, and liver function are all expected to be normal, and there is no known increased risk for cancer or tumors.  

Factors That May Influence the Life Expectancy of Someone Living with Angelman Syndrome

Though many individuals with Angelman syndrome can live a typical lifespan, there are factors that may potentially impact their lifespan.  While it is not common, death related to seizures or sudden unexplained death in epilepsy (SUDEP) has been reported in a small number of individuals who had AS.  Individuals with intellectual disabilities, as are seen in AS, are at an increased risk for accidents, which may be further increased in AS because of motor and speech difficulties. Because feeding abilities may be affected by AS, choking and aspiration (food or liquid being breathed into the lungs, which can cause pneumonia) are also potential risks.   

Work with Your Healthcare Providers to Minimize Risks for Individuals Living with Angelman Syndrome

Parents and caregivers can help reduce the risk of seizure complications or SUDEP by working with their healthcare team to control seizures as much as possible. Parents and caregivers can also work with healthcare providers like physical, occupational, and speech therapists to help promote a safe environment, enable the use of safety equipment when needed, and reduce the risk of accidents or choking.  For more information about general care for individuals living with AS, review (or share with your loved one’s medical team) the published standards of care for AS. FAST also offers educational resources on Angelman syndrome and seizures.

FAST Cares About Every Individual Living with Angelman Syndrome. 

Each person living with Angelman syndrome is unique, and it is impossible to predict specific health outcomes or life expectancy precisely.  Here at FAST, we will continue to work towards transformative therapies for all individuals living with AS, in hopes of reducing any risks or complications and enabling long, happy, healthy, productive, and fulfilling lives for all our loved ones living with AS. 

To learn more about FAST’s efforts to #cureangelman, click here: Angelman Syndrome Clinical Trials | FAST (cureangelman.org)

Angelman Syndrome News