List of people with osteogenesis imperfecta
This is a list of cases of people who have osteogenesis imperfecta.
Activists and speakers
- Raul Krauthausen – German/Colombian activist and recipient of the Order of Merit of Germany.[1]
- Robby Novak (stage name Kid President) – a motivational speaker and YouTube personality as of 2013.[2] He often comments on his own ability to overcome the disorder.[3]
- Peter Radtke – German founder of Die Deutsche Gesellschaft für Osteogenesis Imperfecta, also a philologist and actor.[4]
- Sean Stephenson – an American therapist, self-help author and motivational speaker.[5]
Entertainers
Actors
- Jack Binstead – British actor known for a role in the British sitcom Bad Education.[6]
- Julie Fernandez – British actress best known for her role in the British The Office.[7]
- Rick Howland – Canadian actor who is known for playing Trick on Lost Girl.[8]
- Kerry Ingram – British child actress best known for her role as Shireen Baratheon in the HBO series Game of Thrones and Matilda Wormwood in Matilda the Musical.[9]
- Quentin Kenihan – Australian reality TV personality who played Corpus Colossus in Mad Max: Fury Road.[10][11]
- Tarah Lynne Schaeffer – Sesame Street actress.[12]
- Nabil Shaban – A Jordanian-British actor and writer who founded Graeae Theatre Company, which promotes performers with disabilities.[13]
- Atticus Shaffer – American who plays Brick Heck on The Middle.[14][15][16]
Comedians
- Guillaume Bats – A French humorist.[17]
Musicians
Jake Hardman - chamber pop artist from Manchester, U.K.
- Randy Guss – Drummer for Toad the Wet Sprocket.[18][19]
- Kalyn Heffernan – A Hip-hop artist and producer known for the group Wheelchair Sports Camp.[20]
- Gaelynn Lea – A violinist who has worked with Alan Sparhawk[21] and won an NPR Music contest.[22][23]
- Michel Petrucciani – French jazz pianist who was granted a Légion d'honneur in Paris.[24]
- Pernille Vallentin – Danish singer who also acts.[25]
- Jay Thomas Manuel – Music producer and social media influencer known as Mini Producer
- Sparsh Shah - Indian American rapper, singer, songwriter and inspirational speaker from New Jersey, US.
Journalists and writers
- Franco Bomprezzi – An Italian journalist who received the Order of Merit in 2007.[26][27]
- Magdalena Buczek – Polish journalist and radio announcer associated to Radio Maryja.[28]
- Dyson Carter – Canadian writer, editor, and political activist.
- Christopher Hewitt – British poet and namesake of the Christopher Hewitt Award.[29]
- Natalie Lloyd – Children's author.
- Firdaus Kanga – Parsi playwright known for Trying to Grow.[30]
- Philippe Rahmy – French speaking poet and novelist who has received the Prix Dentan among others.[31][32]
- Stella Young – Australian comedian and journalist.[33]
Politicians
- Nicky Chapman, Baroness Chapman – A British peer and disability rights activist.[34]
- Theresia Haidlmayr – She had been a politician of Austria's The Greens – The Green Alternative.[35]
- Freyja Haraldsdóttir – A member of the Icelandic Constitutional Assembly of 2010.[36][37][38]
People in sports and games
- Valentin Baus – German Paralympic silver medalist in table tennis.[39]
- McKenzie Coan – American Paralympic gold medalist in swimming.[40]
- Doug Herland – American Olympic bronze medalist coxswain.[41]
- Taylor Lipsett – An American Paralympic gold and bronze medalist in ice sledge hockey.[42][43]
- Bobby Nail – American bridge player in the ACBL Hall of Fame.[44]
- Josef Neumaier – A Paralympic multiple medalist in shooting for Germany.[45]
- Nadia Porras – A Paralympic swimmer for Mexico.[46][47]
- Jeremy Synot – A former Australian wheelchair basketball player and current National Wheelchair Basketball League Head Coach of the RSL Queensland Spinning Bullets.[48]
- Jordanne Whiley – A British Paralympic bronze medalist in Wheelchair tennis at the 2012 Summer Paralympics.[49][50]
Notable as a subject
- Madge Bester – A South African woman and formerly the "world's shortest living woman".[51][52]
- Leo Beuerman – The subject of the documentary Leo Beuerman, which was nominated for the Academy Award for Best Documentary (Short Subject).[53]
- Lin Yü-chih – He had once been counted as the "world's shortest man".[54][55]
Royalty
- Prince Oddone, Duke of Montferrat – member of House of Savoy.[56]
- Ivar Ragnarsson (Ivar the Boneless), King of Norway - former ruler of Norway
Technology
- Fredrick Brennan – software developer and type designer who founded the imageboard website 8chan.[57]
Disputed
- French artist Henri de Toulouse-Lautrec.[58] His short stature and health problems are believed to have been due to congenital factors, but he was never diagnosed with a specific disorder and recent theories suggest that he had a mild form of osteopetrosis instead.[59]
- Viking invader of England, Ivar the Boneless: There is notable speculation about his physical condition; but objective diagnosis is not possible since his skeleton was exhumed and burnt 200 years after his death by William the Conqueror.[60]
Fictional cases
Figures in film, television, video games and novels depicted as having osteogenesis imperfecta include:
- Samuel L. Jackson's character Elijah Price in M. Night Shyamalan's 2000 film Unbreakable and its 2019 follow-up Glass, who was born with type I osteogenesis imperfecta.[61]
- Asa Butterfield's character Gardner Elliot in the 2017 film The Space Between Us has with osteogenesis imperfecta due to being born on the planet Mars.[62]
- Ivana Baquero's character Mandy from the 2005 film Fragile had osteogenesis imperfecta. Her nurse becomes obsessed with her and abuses her to keep her injured enough to not be discharged from the hospital, before eventually murdering her and committing suicide.
- V.C. Andrews's character Vera from the 1982 book and 2015 film My Sweet Audrina had osteogenesis imperfecta. As a child, she sometimes intentionally broke her bones because after a break was the only time that her neglectful and abusive father ever showed her affection. As an adult, she dies from falling down a flight of stairs.
- Jodi Picoult's character Willow O'Keefe from the 2009 book Handle with Care is born with type III. Her mother files a wrongful birth lawsuit against her doctor, because of it.
- Jeff "Joker" Moreau, a pilot from the Mass Effect video game series. Due to the advanced technology in the series' science-fiction setting, Joker uses medication, braces and cybernetic implants that allow him to walk and dance, though not as fluidly as those without the disease.[63]
- In Grey’s Anatomy, Samuel Norbert Avery, the son of Jackson Avery and April Kepner, had type II osteogenesis imperfecta. He was baptized and died within minutes.
- The titular character of Frank Portman's novel Andromeda Klein has osteogenesis imperfecta, making her hard-of-hearing.
References
- Fellow: Raúl Krauthausen Archived 2014-02-19 at the Wayback Machine, germany.ashoka.org Retrieved 11 April 2013
- "The inspiring life of the "Kid President"". CBS News. Archived from the original on April 27, 2014. Retrieved September 27, 2013.
- Soul Pancake. "The True Story of Kid President." YouTube. Posted 2013-02-07. Retrieved 2013-09-27.
- "Osteogenesis Imperfecta Federation of Europe".
- Gregory, Ted (May 5, 2009). "Osteogenesis Imperfecta: Motivational Speaker Sean Stephenson Uses His Disorder to Inspire Others". Chicago Tribune. Archived from the original on February 22, 2011. Retrieved August 7, 2011.
- "Chessington actor backing jeans for genes charity". Surrey Comet.
- "Julie Fernandez – founder of The Disability Foundation". Tdf.org.uk. Archived from the original on 2013-05-23. Retrieved 2011-08-15.
- "Rick Howland Interview with Chet Cooper". www.abilitymagazine.com.
- "Schoolgirl nominated for prestigious Olivier Award". maidenhead-advertiser.co.uk. Maidenhead Advertiser. 19 March 2012. Retrieved 6 September 2012.
- "Is this Australian cinema's greatest moment?".
- "Adelaide Now".
- Williams Cook, Sally (17 January 1994). "Girl in wheelchair joins 'Sesame Street' cast". The Free Lance-Star. Fredericksburg VA. p. B6. Retrieved 16 May 2011.
- Banks-Smith, Nancy (2003-06-13). "Short and to the point". The Guardian. London. Retrieved 2010-05-20.
- "Meet Atticus Shaffer 2006 Football Poster Child" (PDF). The Al Malaikahan. May 2006. p. 7. Archived from the original (PDF) on 7 July 2011. Retrieved 20 May 2010.
- "Shriners". Retrieved 2011-08-15.
- Heldenfels, Rich (2010-03-04). "Akron Beacon Journal". Ohio.com. Retrieved 2011-08-15.
- "Le Figaro (French)".
- "OIF Newsletter". Retrieved 2011-08-15.
- Ragogna, Mike (2010-06-15). "Huffington Post". Huffington Post. Retrieved 2011-08-15.
- Ferner, Matt (9 January 2012). "Wheelchair Sports Camp: Kalyn Heffernan On Hip-Hop, Occupy Denver" – via Huff Post.
- Minnesota Public Television Association (pdf)
- "Duluth musician Gaelynn Lea records 'Tiny Desk Concert' for ..."
- "Meet Gaelynn Lea, The 2016 Tiny Desk Contest Winner". NPR.org.
- Michel Petrucciani: Victory of the Spirit, International Herald Tribune, 12 January 1999.
- "Danish OI magazine (PDF)" (PDF).
- informatici, Segretariato generale della Presidenza della Repubblica – Servizio sistemi. "Le onorificenze della Repubblica Italiana". www.quirinale.it.
- Tesina in CL
- Greg Simons; David Westerlund (3 March 2016). Religion, Politics and Nation-Building in Post-Communist Countries. Routledge. p. 171. ISBN 978-1-317-06715-3.
- "Christopher Hewitt – disabled gay poet". 21 July 2004.
- Dallas – Movies – Willing and able Archived September 9, 2009, at the Wayback Machine
- "Le Prix Michel-Dentan attribué à Philippe Rahmy – News". www.unil.ch.
- CBI.gov Archived 2015-09-23 at the Wayback Machine
- Michelle Griffin (23 September 2011). "Lunch with Stella Young". Theage.com.au. Retrieved 2013-07-26.
- "Sydney Morning Herald". Smh.com.au. 2009-09-10. Retrieved 2011-08-15.
- Haidlmayr, smilerkreativ.at, retrieved 3 March 2015
- "Icelandic woman changes mindsets". Stuff. 20 August 2013.
- Review, Iceland (1 December 2010). "Iceland Election Results Announced". Archived from the original on 21 May 2013. Retrieved 9 June 2015.
- "Kona ársins – Nýtt Líf – Freyja Haraldsdóttir – Myndasafn mbl.is". www.mbl.is.
- "Paralympics-Highlights: Das war die Nacht in Rio". Der Spiegel. 13 September 2016 – via Spiegel Online.
- "Paralympics 2016 – The OI Society of Australia – The OI Society of Australia". www.oiaustralia.org.au.
- Tone. "Rowing at Pacific Lutheran University began in 1964" (PDF). Archived from the original (PDF) on February 12, 2006. Retrieved 2011-08-15.
- "USA Hockey". webcache.googleusercontent.com. Retrieved 2011-08-15.
- Paralympics info, McKinney Courier-Gazette, 6 April 2006.
- "Nail, G. Robert – American Contract Bridge League". www.acbl.org.
- "Athlete Bio". ipc.infostradasports.com.
- "ESPN: The Worldwide Leader in Sports". ESPN.com.
- COAH.-, Joel Flores Maltos / EL SIGLO DE TORREÓN / TORREÓN (31 October 2011). "Nadia Porras viaja a Parapanamericanos".
- "Breaks toughen Donna Synot and her family". Herald Sun. Retrieved 14 April 2015.
- "Athlete Bio". ipc.infostradasports.com.
- "Lucy Suker and Jordanne Whiley survive match point to win bronze". The Daily Telegraph. 7 September 2012.
- Murphy, Wendy (2002). Orphan Diseases. Twenty-First Century Books. p. 78. ISBN 978-0-7613-1919-1. viewed at Google Books
- "World's shortest man, woman campaign for disabled". CNN News Asia. Cable News Network. 3 November 1998. Retrieved 2008-12-10.
- "LJ World".
- "CNN – World's shortest man, woman campaign for disabled – November 3, 1998". www.cnn.com.
- Murphy, W. (2002). Orphan Diseases: New Hope for Rare Medical Conditions. Twenty-First Century Books. ISBN 0-399-14218-5
- (in Italian)GenovaQuotidiana
- Machkovech, Sam (March 20, 2015). ""I don't even pretend I can stop it": 8chan's founder talks doxing, Internet freedom". Ars Technica.
- "Henri de Toulouse-Lautrec > Biography > Chronology". Toulouselautrec.free.fr. Retrieved 2011-08-15.
- "Noble figure". The Guardian. London. 2004-11-20. Retrieved 2010-05-20.
- The Vikings, Frank. R. Donovan, author; Sir Thomas D. Kendrick, consultant; Horizon Caravel Books, by the editors of Horizon Magazine, Fourth Edition, American Heritage Publishing Co.: New York, 1964, LCC# 64-17106, pp. 44–45; 145, 148.
- Unbreakable (2000) – IMDb Archived 2010-12-02 at the Wayback Machine
- "'The Space Between Us': The Science Behind the Science Fiction". Space.com. Retrieved 2018-03-19.
- Jeff "Joker" Moreau – Mass Effect Wiki – Neoseeker Archived 2015-12-22 at the Wayback Machine
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