Prader-Willi syndrome is a genetic disorder that affects growth, behavior, and learning. There is no cure for the syndrome, but continual monitoring and treatment may improve a person’s quality of life.

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Prader-Willi syndrome (PWS) is a rare genetic disorder that develops due to the deletion of chromosome 15. People with PWS may experience poor growth and low muscle tone in childhood, low muscle mass, and excessive eating as they age.

While PWS on its own does not cause early death, complications from overeating and obesity may shorten an individual’s lifespan.

Here’s what you should know about PWS, what issues may potentially cause death, and what may prevent life threatening complications.

The median age of death for a person with PWS is ages 30 years. A 2022 review of studies on morbidity and mortality found that the average age of death may be closer to 21 years old.

An individual may live a shorter or longer life depending on a number of factors. Overall, the life expectancy for people with PWS ranges between 1 month and 58 years. Some people with PWS may live into their late 60s.

Learn more about Prader-Willi syndrome.

Respiratory failure is the most common cause of death, responsible for up to half of the deaths of both children and adults with PWS. Most people with PWS who died of respiratory complications presented with a condition called restrictive ventilatory impairment. Put simply, this means that the lungs cannot hold as much air as they used to, making breathing difficult.

According to the National Health Service (NHS) in the United Kingdom, the risk of early death may increase If a person eats excessively (hyperphagia), gains weight, and develops health conditions related to obesity.

Other potential causes of early death include:

Experts share that there is no significant difference in age of death and cause of death between males and females with PWS.

One of the biggest risk factors for early death is obesity. One study indicates that up to 98% of people who died of respiratory issues had obesity. Other conditions that may increase the risk of early death from respiratory issues include scoliosis and sleep apnea.

Low levels of human growth hormone or delayed treatment with human growth hormone may also increase the risk of early death.

Early diagnosis, understanding of complications, and continued treatment may help prevent early death for people with PWS.

More specifically, compulsive eating is a significant predictor of early death. Treatment that reduces the drive to eat may help with this symptom and prevent occurrences such as choking and obesity that lead to accidents and health complications.

Treating low growth hormone issues may also help. In 2000, the Food and Drug Administration (FDA) approved treatment with human growth hormone. Since this became available, people with PWS started having longer life spans.

There is no cure for PWS. However, with advances in treatment and management, the death rate has been decreasing by around 1.25% per year. People with PWS who control their diet and eating habits and otherwise manage their condition well may have a typical life expectancy.

How long do individuals with Prader-Willi syndrome typically live?

Sources differ on the exact age. Some say the mean age of death is around age 30 years. Others say the average life expectancy is 21 years old, but some people with PWS people have lived well into their 60s.

What is the most common cause of death in people with Prader-Willi syndrome?

Respiratory failure (adults) and respiratory infection (children) are the most common causes of death in people with PWS.

Can you develop Prader-Willi syndrome as an adult?

No, PWS is a condition that people are born with. That said, some people may not receive a diagnosis of PWS condition until they reach adulthood.

PWS itself does not shorten a person’s life expectancy. Early diagnosis and appropriate treatment may prevent associated complications from becoming life threatening.

Additionally, many people with PWS may die suddenly or unexpectedly. For this reason, experts stress that parents and caregivers should seek medical attention whenever they have concerns.