15 Famous People with Prader-Willi Syndrome (PWS)

15 Famous People with Prader-Willi Syndrome (PWS)

Originally Published by John K in October 2023 and updated by Faith in May 2024

“Unlocking the Extraordinary: 10 Remarkable Individuals with Prader-Willi Syndrome (PWS)” invites you to enter the world of this extremely rare genetic illness, which was discovered in the 1950s by Swiss physicians Andrea Prader and Heinrich Willi.

PWS, with its intricate web of chromosome deletions and imprinting anomalies on chromosome 15 q11-13, alters a child’s metabolism in extraordinary ways.

This enthralling voyage follows the lives of those who defy the odds, occurring in only one out of every 22,000 births, and leaving an unforgettable impression on the world.

Prader-Willi Syndrome (PWS) changes an individual’s body and behaviour causing severe low muscle tone and poor feeding during early infancy. The affected develop an extreme hunger between 2 and 6 years of age that leads to chronic overeating (hyperphagia), obesity, intellectual disability, and shortness of height.

In addition, victims are most likely to develop type 2 diabetes. PWS resembles Down syndrome since victims develop chromosomal disorders with shared clinical features, including late cognitive-motor development and reduced muscle tone. Here are 15 famous people with PWS

1. Harvey Price

Courtesy of YouTube

Harvey is the most renowned celebrity suffering from PWS. He is a Reality TV star featured on his mother’s Katie Price reality shows since he was a child. Harvey also suffers from autism and Septo-Optic dysplasia which means he is blind.

Harvey has had learning difficulties and behavioral challenges but he has risen above his shortcomings. He is an avid advocate for people with disabilities and has inspired many others with his positive attitude and resilience.

In addition, Harvey and his mother Katie, have campaigned to make online abuse a criminal offense that has been named Harvey’s Law.

2. Chris Burke

Chris Burke is an American actor and musician born with Down Syndrome in 1965. Little was known about the disorder at the time and further research on his condition revealed PWS.

His parents were told to institutionalize him but they decided to raise him at home and nurture his talents since he enjoyed watching TV and movies and wanted to be on television.

His family encouraged him to follow his dream to overcome his challenges and pursue his acting career. He is now best known for his role on the prime-time TV series “Life Goes On.”

3. Susan Boyle

Courtesy of YouTube

Susan Magdalane Boyle is a Scottish singer with PWS who rose to fame in 2009 in the British talent show Britain Got Talent. She was born in 1961 when her mother was 45 years of age.

She was diagnosed with Asperger Syndrome in 2013 after she was misdiagnosed as a child. She had grown up thinking that she had been briefly deprived of oxygen during a difficult birth resulting in a learning disability.

She is also on the Autism spectrum with an IQ “above average”. She became a by global sensation after singing “I Dreamed a Dream” from Les Misérables during the show’s third series.

She has released several albums since and gone on several world tours inspiring many people with disabilities.

4. Jamie Brewer

Jamie Brewer is an American actress and model born in 1985 with PWS. She is a professional actress best recognized for her roles in the FX horror anthology television series “American Horror Story”.

During the show’s series, she has had recurring roles in different personas such as Adelaide Langdon in Murder House, Nan in Coven, Chester Creb in Freak Show, Hedda in Cult, etc.

She has also been featured on the TV shows Glee and Southland. She has inspired many people with disabilities and has shown that it is possible to achieve your dreams regardless of the condition.

5. Sarah Gordy

Courtesy of YouTube

Sarah Gordy is a British actress born in 1976 with Down Syndrome and PWS. Sarah is best known for her roles in the films “The A Word”, “Ralph & Katie”, “Strike: The Silkworm”, “Upstairs Downstairs”, “The Long Call”, “Call the Midwife”, “Holby City “and “Doctors”.

Gordy has also starred in theatre productions, short films, radio dramas, and commercials. Sarah became the first woman with Down syndrome to be made an MBE which stands for Most Excellent Order of the British Empire; a British order of chivalry.

She also received an honorary degree from a UK university becoming the first person with Down syndrome to do so. She is an advocate for people with disabilities, and she has used her platform to raise awareness.

6. Lauren Potter

Lauren is an American actress, producer, advocate, and comedian with Down syndrome and PWS born in 1990. Her disorder affected her speech and learning but it did not hinder her from pursuing her passion.

She is recognized for her roles on the FOX series Glee, Those Who Wish Me Dead, and Guest Room. Lauren is an advocate for those with disabilities and is associated with related organizations like AbilityPath, Best Buddies International, the American Association of People with Disabilities, Special Olympics, etc.

In addition, she was appointed by President Barack Obama to the President’s Committee for People with Intellectual Disabilities in 2011. She advised the White House on issues related to that demographic speaking out about the importance of inclusion and acceptance for people with disabilities.

7. Zach Anner

Courtesy of YouTube

Zach Anner is an American comedian, actor, and writer with cerebral palsy born in 1989. Zach is famous for his YouTube videos and his stand-up comedy. He gained worldwide recognition when he submitted a video to Oprah Winfrey’s “Search for the Next TV Star” competition.

He later hosted his own TV show after winning Oprah Winfrey‘s “Search for the Next TV Star. Zach appeared on the TV shows Glee and American Horror Story and His wheelchair travel show called Rollin’ With Zach premiered in 2011.

Anner wrote for and guest-starred on the ABC-TV sitcom “Speechless” which was centered on a teenager with cerebral palsy. He has written a book titled “If at Birth You Don’t Succeed: My Adventures with Disaster and Destiny”

8. Charlotte

Charlotte is an eight-year-old girl from Australia who suffers a rare, multisystemic, genetic disorder involving the hypothalamus PWS. Charlotte was only five weeks old when she was diagnosed with the disorder.

She was featured in a Sydney Morning Herald article about her life with the condition that genetically programmed her to be obese.

Her mother is grateful that she is growing up well in the PWS spectrum and worries about her daughter’s future since people with PWS often have intellectual disabilities or are autistic. Charlotte is resilient and does not allow the disorder to deter her

9. David Lynch

 Courtesy of YouTube

David is an accomplished American filmmaker and artist born in 1946 with PWS. The disorder impacted his learning and social abilities.

He is renowned for his surrealist cinematic works including Eraserhead, Blue Velvet, and Mulholland. He has managed to forge a thriving career in the realms of film and television despite his disorder. He inspires other PWS individuals that anything is possible

10. Olivia Tomlinson

Olivia Tomlinson is a young girl from Sheffield, England with Prader-Willi Syndrome. She rose to prominence in 2021 when her father, Mark Tomlinson, embarked on a four-marathon endeavor to generate funds for the Prader-Willi Syndrome Association.

Her father’s determination raised awareness and she became a beacon of hope and inspiration to many people.

11 Lauren Davis

A picture of Lauren Davis.

The professional tennis player is among the famous people who have been open about their diagnosis and living with Prader-Willi syndrome. Even with challenges that came with living with the condition like weight management and issues with regulating her metabolism, she has had a successful tennis career that she started at an early age and has risen through the ranks. The athlete who is known for her tenacity has achieved great feats in her career including reaching the third rounds in the French Open, US Open and the Australian Open. Her continuous commitment and determination is a source of inspiration for others living with the condition in that they are encouraged that they can live well with Prader-Willi syndrome.

12 Cameron Stevens

The British actor living with Prader-Willi syndrome has had a successful acting career and broken many barriers in the process. Having appeared in many television shows and films, the actor is a source of inspiration and testament that one should not let the limitations that they may have from achieving their dreams and becoming great in their fields. The actor is also a keen advocate on issues concerning PWS in that he works towards raising awareness about the condition and advocating for inclusivity in the entertainment field.

13 Joaquin Lara

The Mexican sculptor and painter who is famed for his vibrant artwork that evokes a lot of emotions is also living with Prader-Willi syndrome. The artist got into the industry at an early age and has continued to do exceptionally well despite living with the condition. The artist has revealed that he finds solace in his art and that is what helps him cope with living with Prader-Willi syndrome. Furthermore, his work which often depicts human faces and figures vividly brings out emotions that the subjects have thus captivating the audience. Joaquin is a source of inspiration to many who applaud him for his courage and commitment.

14 Joe Engressia Jr.

The famed motivational speaker was born with Prader-Willi syndrome and he has gone on to defy expectations and become great. Joe, who is also an advocate for people living with disabilities, uses his experiences living with the condition to create awareness and encourage his audience to embrace people with their differences and strive to be the best versions of themselves. The motivational speaker has been featured in many news pieces and documentaries and his message resonates with many people across the globe.

15 Nicole Hunn

Nicole Hunn is a well-known American author and advocate who specialises in baking and cooking without gluten. Despite having Prader-Willi syndrome (PWS) from birth, Hunn has overcome its obstacles to become well-known in the food industry. Her cookbook, “Gluten-Free on a Shoestring,” has received a lot of praise for its approachable recipes and helpful advice. She is the author of many publications.

Despite the difficulties brought on by PWS, such as issues with impulse control and food-related behaviours, Hunn has persisted and succeeded in her professional life. She makes use of her position to spread knowledge about PWS by sharing her own experiences and observations in an effort to increase empathy and support for those who are affected by the syndrome.