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8 Famous People with Williams Syndrome

*Originally published by Purity in July 2023 and updated by Felix in February 2024

Williams Syndrome is a very rare genetic disorder caused by the deletion of a portion of chromosome 7. This usually occurs in the pre-natal stages, and children born with the condition are often underweight. General symptoms include mental deficiencies, cardiac problems, hypersensitivity to loud sounds, extreme extroversion or sociability, short stature, and very distinct facial features such as misaligned lips, an upturned nose, or a wide mouth.

These symptoms often vary among individuals, and their intensity will range from mild to severe. There’s no cure, but there are specialized treatments that can be employed to mitigate the symptoms and better the lives of the patient. There are a few famous people who have been diagnosed with the syndrome, and here are 8 of them.

Read more on: 15 Famous People who thrived with Turner Syndrome.

1. Ben (Big Red) Monkaba

Ben Monkaba (commonly known as Big Red) is a musician, spotting red hair and a wide, beautiful smile. He was diagnosed with Williams Syndrome when he was only six weeks old. He has had several surgeries and treatments for his heart and spinal complications. Ben’s love for music was evident from an early age, and such affinity is quite common in children with the syndrome.

He was already playing drums by the time he was a fifth grader, and his charming, outgoing personality was a key addition to his performances. He’s also had a passion for clowning, which helps him spread joy to others. He’s a professional drummer, vocalist, and clown.

2. Gloria Lenhoff

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Gloria is a soprano singer and a pretty good one. She was diagnosed with Williams Syndrome at an early age but went on to develop her love for music and singing to become a notable name in the game. She has collaborated with world-famous symphonies and bands such as Aerosmith. Her mastery of over 30 languages in song is beyond mind-blowing.

She can sing over 2,000 songs in these different languages, all in perfect accents and pitch. Persons with the syndrome demonstrate a strong liking for music, and their musical ability is often superb. Gloria has been vocal about raising awareness about Williams Syndrome. Her contribution has helped in advancing the understanding of the condition.

3. Amy Koch

‘Be Proud of who you are’, is Amy’s bold statement for life. She was 24 years old when she was diagnosed with a genetic disorder. Amy Koch was featured in KLRU-TV”s ‘Women and Girls Lead’ series in Austin, Texas. The public media project aims at bringing people together in solidarity with major issues that commonly face women and girls. Amy is also a graduate of Project SEARCH, an initiative by Cincinnati Children’s Hospital and Medical Center to hire persons with developmental disabilities.

4. Gabrielle Marion Rivard

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She is a Canadian actor and musician known for her role in the 2013 Canadian drama film, Gabrielle. The film features a cast of people with developmental disabilities in real life, forming part of a choir. Marion-Rirvard plays the role of Gabrielle; a young lady with Williams Syndrome who is part of the choir.

She suffers from the condition in real life too. As is often a common characteristic of people living with the syndrome, Marion-Rivard is known for her larger-than-life smile and charm around people. For her stellar performance in Gabrielle (2013), she won the Canadian Screen Award for Best Actress in 2014.

Read also; 10 Famous People living with Sickle Cell Anemia and Their Inspiring Stories. 

5. Jeremy Vest

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Jeremy Vest is an American actor and gifted drummer living with Williams Syndrome. He was diagnosed with the condition at the age of 3. Jeremy showed immense interest in music from an early age, and he later attended the Berkshire Hills Music Academy in South Hadley, Massachusetts. He studied there for two years before becoming a member of the ‘How’s Your News?’ team as a drummer in 2004. He started playing drums at the age of six and now often plays with local bands. He is sociable, comfortable on camera, and has been described as a ‘born performer’ by some of his critics.

6. Jenny Lynn Unrein

Jenny Unrein is an American artist and entrepreneur living with Williams Syndrome. She is the owner of JennyLu Designs, a business that makes paintings, greeting cards, customized mugs, and other handcrafted items all over the world. Her stepmother is an artist too, and she observed as Jenny started making beautiful cards at the age of six.

She has been a fundamental support to Jenny all through and helps her in the running of the business. Jenny has shared her passion for drawing happy things with The Mighty Post, and together with her stepmom, she has been in numerous art shows and conferences across the country. The artwork has been shown in the White House and the two have received orders from as far as Australia and Asia.

Read more on: Heterochromia in the Spotlight: 15 Famous People with Different Colored Eyes.

7. Leah Ward

Leah Ward is a motivational speaker living with Williams Syndrome. She is also a close friend of Levelle Moton, North Carolina Central men’s basketball coach. Their friendship grew from a prom date night which had been organized for persons who, because of their disabilities or illnesses could not attend their high school proms. ‘Leah was a rock star when we pulled up to the dance in the pink limousine’, said Moton, speaking to NCAA’s Greg Johnson. After the event, the two agreed to stay in contact and talk on Sundays, and a tight-knit friendship started to form. Leah is outspoken, bold, and charmingly sociable. Levelle has let her address his team before a match.

8. Lauren Potter

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Potter was born and raised in California in 1990. She’s an American actress, comedian, and advocate for people with disabilities. She is known for playing Becky Johnson in the TV series ‘Glee’ (2009 to 2015). The latter was a musical comedy-drama series that aired on FOX. Potter has been vocal about her experience growing up with the syndrome and often advocates for people with the condition too. She has been involved in various organizations, including Best Buddies International, the National Down Syndrome Society, the American Association of People with Disabilities, and Special Olympics.

Read also; 20 Famous People with OCD.

Living with Williams Syndrome is challenging, but with appropriate medical attention, and adequate support, people diagnosed with the condition can easily lead normal lives. 

10 Facts about Williams Syndrome

As a genetics enthusiast, I find Williams syndrome to be a captivating subject. What makes Williams syndrome intriguing are the myriad ways it manifests in individuals. From its hallmark facial features, including a broad forehead, full cheeks, and a short nose, to the heightened sensitivity to certain sounds known as hyperacusis, each aspect sheds light on the complexities of this condition. Moreover, individuals with Williams syndrome often exhibit a unique cognitive profile, characterized by mild to moderate intellectual disability alongside strengths in verbal abilities and social skills.

Despite facing challenges such as developmental delays and heart issues like supravalvular aortic stenosis, individuals with Williams syndrome often possess an extraordinary love for music and an infectious, outgoing personality. However, it’s crucial to acknowledge the hurdles they face, including the increased risk of anxiety disorders and elevated blood calcium levels. Throughout this article, we’ll delve into fascinating facts about Williams syndrome, shedding light on its impact on individuals’ lives and the broader understanding of genetics and human diversity.

Here are fifteen facts to know about Williams syndrome:

1. Williams Syndrome is a Genetic Condition that is Present at Birth

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Williams syndrome isn’t something you can catch or develop later in life. It’s a genetic condition that affects a person from the moment they’re born. The cause is a deletion of certain genes on the seventh chromosome that occurs very early in prenatal development. These missing genes lead to the unique constellation of traits and characteristics that define Williams syndrome. So whether it’s the distinctive facial features, cognitive strengths, challenges, or outgoing personality – it’s all written into the DNA and there from day one. Williams syndrome is baked into a person’s genetic makeup before they’ve even entered the world.

2. It causes Distinctive Facial features like a Broad Forehead and Full Cheeks

One of the most recognizable traits of Williams syndrome is the unique facial appearance it causes. Individuals with this condition tend to have a broader forehead and a slightly shorter distance between the nose and upper lip. Their cheeks also appear fuller and more rounded than typical, as a result of the genetic deletions. The missing genes affect proper facial bone and muscle development, leading to that characteristic “elfin” look. While subtle, these facial differences are often one of the first clues that prompt doctors to investigate an underlying diagnosis of Williams syndrome in a child.

3. It is also known as Beuren Syndrome and Williams-Beuren Syndrome

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You may have heard Williams syndrome referred to as Beuren Syndrome or Williams-Beuren Syndrome. So what’s the deal with the multiple monikers? Well, it all goes back to the scientists involved in identifying and describing this genetic condition in the 1960s. Dr. A.J. Beuren, a German heart specialist, was one of the first to report on the unique combination of characteristics. Around the same time, Dr. J.C.P. Williams, an American physician, also published work on the syndrome. To honor their contributions, the full name Williams-Beuren Syndrome was adopted.

4. Common Heart issues affect individuals with Williams Syndrome

The heart is one of the main health issues for people with Williams syndrome. In up to seventy-five percent of cases, this ailment is a congenital cardiovascular disease or defect. The most typical is supravalvular aortic stenosis, a narrowing of the main artery that the heart uses to pump blood. Over time, this restriction puts additional strain on the heart by requiring it to pump harder. High blood pressure and pulmonary artery stenosis are two more common cardiac conditions. Nonetheless, Williams syndrome raises the risk of heart disease, thus reducing this risk requires routine cardiologist monitoring.

5. John C.P. Williams originally documented the Williams Symptoms in 1961

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Williams syndrome was first brought to widespread medical attention by Dr. John C.P. Williams in 1961. Williams, a cardiac doctor treating adults and children with heart conditions, noticed several of his young patients shared distinct physical traits and intellectual characteristics. Recognizing this as a new syndrome, Williams carefully documented the cases and published his clinical observations in an influential journal article titled “Fragile Resolution of Cardiovascular Issues in Williams Syndrome.” His pioneering work identifying the unique symptom pattern paved the way for further research into understanding the genetic underpinnings we now know as Williams syndrome.

6. Either the Sperm or the Egg is Responsible for the Deletion

A seventh chromosomal gene loss is the cause of Williams syndrome. However, where did this genetic accident start? It ultimately boils down to which sperm or egg has that one missing DNA strand. You see, during conception, a baby receives a set of chromosomes from the mother’s egg and a set from the father’s sperm. When a person has Williams syndrome, the critical seventh chromosomal region is absent from either the sperm or the egg cell before fertilization even takes place. Therefore, the genetic mistake exists from the embryo’s very first cell division. Which parent passes on the chromosomal defect that causes their child to be born with Williams syndrome is just a matter of genetic luck.

7. Between Twenty to Thirty Thousand Americans are thought to be impacted

While Williams syndrome is considered a rare genetic disorder, it may be more prevalent than many realize. Experts believe there are likely between twenty to thirty thousand Americans living with Williams syndrome. That’s a sizeable number for such a specific chromosomal disorder. However, due to the subtlety of some symptoms and lack of widespread screening, many cases may go undiagnosed, especially in adults. As awareness grows about identifying distinct cognitive, behavioral, and physical traits, the number of known cases in America could increase substantially.

8. Williams Syndrome carriers have a 50% probability of passing it to Offspring

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For parents who carry the genetic mutation that causes Williams syndrome, there’s a fifty-fifty chance of passing it along to their children. If just one parent has the deleted segment of chromosome 7, each offspring has an equal fifty percent risk of inheriting that faulty gene. The probabilities remain the same with each subsequent pregnancy for carrier parents. While the odds may seem daunting, genetic counseling can help families understand the risks and make informed decisions. Advanced testing can also detect Williams syndrome prenatally these days. Overall, that fifty percent recurrence rate underscores the hereditary nature of this disorder.

9. People who have Williams Syndrome are usually Extremely Friendly

One endearing trait of Williams syndrome is an overly friendly, outgoing personality. From a very young age, these individuals tend to show no stranger anxiety at all. They’re often described as being indiscriminately sociable – striking up conversations and interactions with anyone and everyone around them. Their lack of social inhibition means people with Williams syndrome will warmly engage with familiar faces as well as those they’ve just met. This excessive amicability likely stems from the genetic deletions impacting their brain’s social processing. While coming across as charming to some, it can potentially put them at risk as they don’t have a typical sense of wariness around strangers.

10. Victims excel in Language, Music, and Social Cognition despite Cognitive challenges

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Although Williams syndrome often impacts intellectual abilities, some fascinating strengths emerge. Many with this condition demonstrate exceptional talents for language skills, musical interests and abilities, and social cognition compared to their overall IQ levels. Despite cognitive deficits, they tend to have advanced verbal abilities, an ear for music and tones, and a heightened social awareness of others’ perspectives and emotions. So while challenges exist, extraordinary peaks in language prowess, musical giftedness, and social intelligence frequently arise as remarkable paradoxical strengths in those living with Williams syndrome.

In conclusion, delving into the world of Williams syndrome has been an eye-opening journey. From its genetic origins to its varied manifestations, this condition teaches us valuable lessons about resilience, diversity, and the intricate interplay between genetics and human behavior. Let us continue exploring and understanding rare conditions like Williams syndrome to foster empathy and inclusivity.