Understanding Turner Syndrome
Turner syndrome is a chromosomal condition that affects only females. It results when one of the X chromosomes is missing or partially missing. The most common feature of Turner syndrome is short stature, with the average adult height being 4'7". Other physical features may include:
- Broad chest and widely spaced nipples
- Low hairline at the back of the neck
- Low-set ears
- Swollen hands and feet
Girls with Turner syndrome usually experience puberty late and short stature. They have problems with spatial perception and mathematical reasoning. While most girls with Turner syndrome have normal intelligence, they may have difficulties processing visual-spatial relationships and nonverbal cues.
Around 1 in every 2,000-4,000 female births worldwide has Turner syndrome. While there is no cure, treatments include growth hormone therapy during childhood and hormone replacement therapy during adolescence and adulthood to induce puberty and maintain female characteristics.
Famous People with Turner Syndrome
Despite the challenges of living with Turner syndrome, many girls and women with the condition have gone on to live successful, fulfilling lives. Here are some famous people who have Turner syndrome:
Bonnie Pinto
Bonnie Pinto was born in 1954 with Turner syndrome. As a child, doctors told her parents she would not live past age 15. Defying the odds, Pinto became a registered nurse and founded the Turner Syndrome Society of the United States in 1987. She served as the society's first president until 1993.
Pinto helped launch the first National Turner Syndrome Conference in 1989 and advocated for growth hormone therapy for girls with short stature. She has dedicated her life to raising awareness of Turner syndrome and providing support to others.
Danielle Moonstar
Danielle Moonstar is a fictional Marvel comic book superhero with Turner syndrome. Also known as Psyche and Mirage, her powers include creating telepathic illusions. As a member of the New Mutants, Moonstar uses her abilities to help her team.
The character was purposely created with Turner syndrome by writer Chris Claremont to add diversity to the Marvel universe. As a Native American with Turner syndrome, Moonstar brings visibility to populations that are often underrepresented in comics.
Emily Roeske
Actress Emily Roeske was born in 1991 with Turner syndrome. She is best known for her role as Sophia Rivera in the Disney Channel sitcom The Suite Life of Zack & Cody and its spinoff The Suite Life on Deck.
Roeske portrayed Sophia, the adopted daughter of Carey Martin (Kim Rhodes), from 2005 to 2011. She appeared in over 50 episodes of the hit Disney shows. Roeske took growth hormone injections throughout filming to reach an average height.
Kara Colley
Kara Colley is a young woman born in 1985 with Turner syndrome. She started taking growth hormone at age 9 to reach a height of 4'10" as an adult. Colley shared her experiences growing up with Turner syndrome in the award-winning 2007 documentary "18 to 88: A Turner Syndrome Journey."
The film chronicles Colley's challenges and triumphs from age 18 to 26. Now a public speaker, she travels across North America delivering inspirational talks about living with Turner syndrome and overcoming the odds.
Mary Burgess
Mary Burgess set a Guinness World Record in 2005 as the world's oldest living woman with Turner syndrome at age 73. Born in Buenos Aires, Argentina in 1931, Burgess was one of the first women with Turner syndrome to receive estrogen replacement therapy in young adulthood.
Burgess worked as a secretary for over 30 years while traveling extensively around the world. She participated in medical research to help doctors better understand Turner syndrome in adults.
Turner Syndrome in Pop Culture and Media
Turner syndrome has gained some exposure over the years through storylines in popular TV shows, films, and songs:
Glee
The hit musical TV series Glee featured a storyline about a character with Turner syndrome. Cheerleader Becky Jackson (Lauren Potter) was revealed to have Turner syndrome in Season 3, explaining her short stature.
Raising Hope
The sitcom Raising Hope included a character named Louise Belcher who had Turner syndrome. Actress Shirley Jones guest starred as Louise, the estranged mother of Virginia Chance who had abandoned her as a child.
My Secret World
Phoebe Jonas starred in this 1996 TV movie as Dawn Rochelle, a teen girl with Turner syndrome. The film highlighted her struggles with dating, friendships, and school while preparing for growth hormone therapy.
"Mary Turner, Mary Turner"
This 1981 song by Irish singer-songwriter Christy Moore is a historical ballad about a woman with Turner syndrome born in 1770. The lyrics emphasize her determination and spirit despite the limitations of her condition.
Changing Perspectives on Turner Syndrome
Perspectives on Turner syndrome have shifted significantly in recent decades due to medical advancements and increased awareness:
Life Expectancy
Average life expectancy was just 15 years old when Turner syndrome was first described in the 1930s. Today, women with Turner syndrome have normal life spans thanks to modern treatments.
Growth Therapies
Growth hormone therapy during childhood enables girls with Turner syndrome to attain near average height. Estrogen therapy at adolescence now allows development of female sex characteristics.
Fertility Options
While infertility was once certain, women with Turner syndrome now have options like egg donation and surrogacy to become mothers.
Public Awareness
Increased media coverage and advocacy has boosted public understanding of Turner syndrome. High-achieving role models also showcase the potential of those with TS.
Turner Syndrome Community and Support
Numerous organizations provide valuable education, advocacy and support for girls and women living with Turner syndrome:
Turner Syndrome Society of the United States
Founded in 1987, TSSUS provides support, research, education and advocacy to empower women with Turner syndrome. They host conferences, workshops and online resources.
Turner Syndrome Support Society (UK)
This UK charity offers information and support services to families affected by Turner syndrome. Their goal is to enable girls with TS to lead independent lives.
Turner Syndrome Global Alliance
TSGA connects Turner syndrome organizations worldwide to facilitate collaboration on research, education and awareness initiatives globally.
Connect with Local Support Groups
Many local Turner syndrome foundations and networks exist across North America to provide community support and events.
Online forums like TurnerSyndrome.org also connect women with TS for advice and companionship.
The Future for Turner Syndrome
Research continues to further improve treatment options and quality of life for girls and women with Turner syndrome:
New Fertility Research
Scientists are studying ways to stimulate ovarian follicles and egg cell maturation in women with Turner syndrome who otherwise could not conceive.
Hearing Loss Advances
Studies are underway to understand causes of progressive hearing loss associated with Turner syndrome and explore future prevention strategies.
Cognitive Testing
Experts are developing more valid testing methods to distinguish cognitive strengths and weaknesses in Turner syndrome for better educational support.
Transition to Adulthood
Programs are being designed to help teens and young women with Turner syndrome successfully transition to independent adult life.
The future looks bright for girls born with Turner syndrome today who will come of age in a society with greater acceptance and opportunities than ever before.
FAQs
What health problems do people with Turner syndrome face?
Common health concerns include short stature, infertility, heart defects, kidney problems, hearing loss, hypothyroidism, diabetes, and autoimmune disorders.
How has life expectancy changed over time for those with Turner syndrome?
In the 1930s, average life expectancy was only about 15 years. Today with modern treatments, women with Turner syndrome have normal life spans.
Can girls with Turner syndrome go through puberty naturally?
Most girls with Turner syndrome do not go through a normal puberty. They require estrogen therapy to initiate puberty and develop female sexual characteristics.
What careers are possible for women with Turner syndrome?
With accommodations, women with Turner syndrome can pursue careers in many fields including nursing, teaching, business, technology, science, and creative arts.
Disclaimer: This article is for informational purposes only and does not constitute medical advice. Always consult with a healthcare professional before starting any new treatment regimen.
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