List of people with osteogenesis imperfecta explained

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 .^{[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]
• – 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]}
• – 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]
• – A Paralympic multiple medalist in shooting for Germany.^[45]
• – 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]

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 and who adopts his childhood nickname "Mr. Glass" as a villain identity.^[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.

Notes and References

1. http://germany.ashoka.org/fellow/raul-krauthausen Fellow: Raúl Krauthausen
2. Web site: The inspiring life of the "Kid President". CBS News. September 27, 2013. live. https://web.archive.org/web/20140427191119/http://www.cbsnews.com/pictures/the-inspiring-life-of-the-kid-president/. April 27, 2014.
3. Soul Pancake. "The True Story of Kid President." YouTube. Posted 2013-02-07. Retrieved 2013-09-27.
4. Web site: Osteogenesis Imperfecta Federation of Europe.
5. News: Osteogenesis Imperfecta: Motivational Speaker Sean Stephenson Uses His Disorder to Inspire Others . Ted . Gregory . . May 5, 2009 . August 7, 2011 . dead . https://web.archive.org/web/20110222043134/http://www.chicagotribune.com/health/chi-sean-stephenson-05-may05,0,4199197,full.story . February 22, 2011 .
6. Web site: Chessington actor backing jeans for genes charity. Surrey Comet.
7. Web site: Julie Fernandez – founder of The Disability Foundation . Tdf.org.uk . 2011-08-15 . https://web.archive.org/web/20130523183551/http://www.tdf.org.uk/about/julie-fernandez.htm . 2013-05-23 . dead .
8. Web site: Rick Howland Interview with Chet Cooper. www.abilitymagazine.com.
9. Web site: Schoolgirl nominated for prestigious Olivier Award . . maidenhead-advertiser.co.uk . 19 March 2012 . 6 September 2012.
10. Web site: Is this Australian cinema's greatest moment?.
11. Web site: Adelaide Now.
12. News: Williams Cook. Sally. Girl in wheelchair joins 'Sesame Street' cast. 16 May 2011. The Free Lance-Star. 17 January 1994. Fredericksburg VA. B6.
13. News: Short and to the point . The Guardian . London . 2003-06-13 . 2010-05-20 . Nancy . Banks-Smith.
14. Web site: Meet Atticus Shaffer 2006 Football Poster Child . The Al Malaikahan . 7 . May 2006 . 20 May 2010 . dead . https://web.archive.org/web/20110707114916/http://www.almalaikah.com/May_06M.pdf . 7 July 2011 .
15. Web site: Shriners . 2011-08-15.
16. Web site: Heldenfels . Rich . Akron Beacon Journal . Ohio.com . 2010-03-04 . 2011-08-15.
17. Web site: Le Figaro (French).
18. Web site: OIF Newsletter . 2011-08-15.
19. News: Huffington Post . Huffington Post . 2010-06-15. 2011-08-15 . Mike . Ragogna.
20. Web site: Wheelchair Sports Camp: Kalyn Heffernan On Hip-Hop, Occupy Denver. Matt. Ferner. 9 January 2012. Huff Post.
21. http://archive.leg.state.mn.us/docs/2013/mandated/130058.pdf Minnesota Public Television Association (pdf)
22. Web site: Duluth musician Gaelynn Lea records 'Tiny Desk Concert' for ....
23. Web site: Meet Gaelynn Lea, The 2016 Tiny Desk Contest Winner. NPR.org .
24. http://www.iht.com/articles/1999/01/12/michel.t.php Michel Petrucciani: Victory of the Spirit
25. Web site: Danish OI magazine (PDF).
26. Web site: Le onorificenze della Repubblica Italiana. Segretariato generale della Presidenza della Repubblica – Servizio sistemi. informatici. www.quirinale.it.
27. https://docs.google.com/viewer?a=v&q=cache:RkfLoJZKArMJ:sos-teniamoci.pbworks.com/f/Tesina%2Bin%2BCL-%2BOsteogenesi.doc+%22franco+bomprezzi%22+osteogenesi&gl=us&pid=bl&srcid=ADGEESgnf-Kj20wOU-qWXtJ5JI1MjEzMQlYgZKpMDyiY-1cCWd20Or4MRNHGbD4a48yqBPA90p0QIkL6wW5GPkVb1pmfNROCsOHUzYkEQ1B-QLYpLBIOm0nlMrmShhrhu9F3D1B3KzJc Tesina in CL
28. Book: Greg Simons. David Westerlund. Religion, Politics and Nation-Building in Post-Communist Countries. 3 March 2016. Routledge. 978-1-317-06715-3. 171.
29. Web site: Christopher Hewitt – disabled gay poet. 21 July 2004.
30. http://www.dallasobserver.com/issues/1999-12-02/film/film2.html Dallas – Movies – Willing and able
31. Web site: Le Prix Michel-Dentan attribué à Philippe Rahmy – News. www.unil.ch.
32. http://www.cbi.gov.cn/wisework/content/102202.html CBI.gov
33. Web site: Michelle Griffin . Lunch with Stella Young . 23 September 2011 . Theage.com.au . 2013-07-26.
34. News: Sydney Morning Herald . Smh.com.au . 2009-09-10 . 2011-08-15.
35. http://www.smilerkreativ.at/bmin/Behinderte_Menschen_in_Not/Haidlmayr.html Haidlmayr
36. Web site: Icelandic woman changes mindsets. Stuff. 20 August 2013 .
37. Web site: Iceland Election Results Announced. Iceland. Review. 1 December 2010. 9 June 2015. https://web.archive.org/web/20130521002747/http://www.icelandreview.com/icelandreview/daily_news/?cat_id=16567&ew_0_a_id=370813. 21 May 2013. dead.
38. Web site: Kona ársins – Nýtt Líf – Freyja Haraldsdóttir – Myndasafn mbl.is. www.mbl.is.
39. News: Paralympics-Highlights: Das war die Nacht in Rio. Der Spiegel . 13 September 2016. Spiegel Online.
40. Web site: Paralympics 2016 – The OI Society of Australia – The OI Society of Australia. www.oiaustralia.org.au.
41. Web site: Tone . Rowing at Pacific Lutheran University began in 1964 . 2011-08-15 . dead . https://web.archive.org/web/20060212183110/http://www.plu.edu/~crew/Docs/HisWilliamsUnbreakable_112201.pdf . February 12, 2006 .
42. Web site: USA Hockey . www.usahockey.com . 2011-08-15 . 2012-12-09 . https://archive.today/20121209185215/http://www.usahockey.com/uploadedFiles/USAHockey/Menu_Team_USA/Menu_Sled_National_Team/SledTeamMediaGuide08.pdf . dead .
43. http://www.courier-gazette.com/articles/2006/04/06/mesquite_news/news/03paralympics.txt Paralympics info
44. Web site: Nail, G. Robert – American Contract Bridge League. www.acbl.org. 2015-08-22. 2014-10-23. https://web.archive.org/web/20141023111921/http://www.acbl.org/about-acbl/hall-of-fame/members/nail-g-robert/. dead.
45. Web site: Athlete Bio. ipc.infostradasports.com.
46. Web site: ESPN: The Worldwide Leader in Sports. ESPN.com.
47. Web site: Nadia Porras viaja a Parapanamericanos. Joel Flores Maltos / EL SIGLO DE TORREÓN / TORREÓN. COAH.-. 31 October 2011 .
48. Web site: Breaks toughen Donna Synot and her family . . 14 April 2015.
49. Web site: Athlete Bio. ipc.infostradasports.com. 2015-06-09. 2016-02-03. https://web.archive.org/web/20160203192241/http://ipc.infostradasports.com/asp/lib/TheASP.asp?pageid=8937&sportid=518&personid=1065208. dead.
50. News: Lucy Suker and Jordanne Whiley survive match point to win bronze. The Daily Telegraph. 7 September 2012.
51. Book: Murphy, Wendy. Orphan Diseases . 2002 . Twenty-First Century Books . 78 . 978-0-7613-1919-1. viewed at Google Books
52. News: World's shortest man, woman campaign for disabled . CNN News Asia . Cable News Network . 3 November 1998 . 2008-12-10 .
53. Web site: LJ World. 2015-06-09. 2013-11-09. https://web.archive.org/web/20131109222805/http://www2.ljworld.com/events/2013/apr/20/61422/. dead.
54. Web site: CNN – World's shortest man, woman campaign for disabled – November 3, 1998. www.cnn.com.
55. Murphy, W. (2002). Orphan Diseases: New Hope for Rare Medical Conditions. Twenty-First Century Books.
56. GenovaQuotidiana
57. Web site: Machkovech . Sam . "I don't even pretend I can stop it": 8chan's founder talks doxing, Internet freedom . Ars Technica . March 20, 2015.
58. Web site: Henri de Toulouse-Lautrec > Biography > Chronology . Toulouselautrec.free.fr . 2011-08-15.
59. News: Noble figure . The Guardian . London . 2004-11-20 . 2010-05-20.
60. 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.
61. https://www.imdb.com/title/tt0217869/ Unbreakable (2000) – IMDb
62. News: 'The Space Between Us': The Science Behind the Science Fiction. Space.com. 2018-03-19.
63. http://masseffect.neoseeker.com/wiki/Jeff_%22Joker%22_Moreau Jeff "Joker" Moreau – Mass Effect Wiki – Neoseeker