Orla Tinsley

Orla Tinsley is a campaigner, author and journalist from County Kildare in Ireland.

Campaigner and Journalist

In June 2005 at the age of 18 Tinsley began writing for The Irish Times on the state of Cystic Fibrosis care in Ireland. Her work launched a lengthy campaign to improve healthcare services and awareness of cystic fibrosis in Ireland. The campaign spanned several years and was a nationwide community effort sustained by the stories and energy of people with CF and their families and communities around Ireland.[1]

In September 2008 she was named Rehab Young Person of the Year [2] In April 2009 she appeared on Late Late Show after writing several pieces in The Irish Times holding government to account on broken promises to build an adult cystic fibrosis unit in Dublin.[3] In November 2009 she was named Irish Tatler Magazine's Woman of the Year [4] in 2009. In 2010 she was awarded the Young Medical Journalist of the Year award.

Documentary

In April 2011 Ms Tinsley presented a special documentary for Radio Telefis Eireann's flagship current affairs programme Prime Time to apply pressure for building to begin at St Vincent's Hospital in Dublin.<ref "name=primetime">"Prime Time - 12th April 2011 (VIDEO)". RTÉ. 12 April 2011. Archived from the original on 28 May 2011. Retrieved 9 November 2015. </ref>

Memoir

In September 2011 her bestselling memoir Salty Baby : A memoir was published by Hachette. It was shortlisted for Best Newcomer at the Board Gais Irish Book Awards.[5]

The Adult Cystic Fibrosis Unit

An Adult Cystic Fibrosis practice was set up at St. Vincent's Hospital in the late 1970s by Professor MX Fitzgerald. CF was one of the first conditions to be treated by a multidisciplinary team comprising doctors, dietitians, physiotherapists, psychologists and nurse specialists. Huge improvements in life expectancy were achieved in this period but when advances in microbial genetics revealed how highly-resistant and life-threatening bacteria could spread through the CF patient population, it became clear that a dedicated space was required to treat CF patients in isolation from one another. There was no dedicated CF ward at this time and it took years to convince those in power to build one. In July 2012, after campaign work over numerous years, a dedicated Cystic Fibrosis Unit opened.[6] The ward block has an outpatient and inpatient facility for people with cystic fibrosis.[6] It also has a floor of isolation rooms for people with cancer and another floor for those with infectious diseases who need isolation.[6]

Similar units have opened in Cork University Hospital and University Hospital Limerick.[7][8]

Transgender rights

Since 2012 Ms Tinsley has focused on the rights of transgender people to attain gender recognition in Ireland. She was named Broadcaster / Journalist of the Year by the Gay and Lesbian Association in 2013.[9]

New Cystic fibrosis Drug

In late 2012 she launched a campaign to get Kalydeco into Ireland after experts rejected making the drug available because it was too expensive. The drug is the first to treat the cause of cystic fibrosis and not just the symptoms.[10] In February 2013 the Minister for Health announced that the drug would be made available.[11]

Since late 2013 Ms Tinsley is one of the first people in the world to be treated by the second new cystic fibrosis drug lumacaftor/ivacaftor which treats the most common mutation of CF. The drug has proven to improve lung function and health for people with CF.[12]

Columbia University

In 2014 Ms Tinsley announced on the Irish talk-show Saturday Night with Miriam that she had been awarded a scholarship to Columbia University. She now lives in New York City.

Awards and Honors

References

  1. ↑ Kerrigan, Gene (27 May 2007). "When people are dying for Ireland.(COMMENT)". Sunday Independent. Retrieved 9 November 2015 – via HighBeam Research. (subscription required (help)).
  2. 1 2 http://www.peopleoftheyear.com/Gallery/Video/2008-Videos/Orla-Tinsley-named-as-Joint-Young-Person-of-the-Ye.asporla
  3. ↑ http://www.rte.ie/tv/latelate/20090403.html
  4. 1 2 http://www.irishtimes.com/news/woman-of-year-cystic-fibrosis-campaigner-honoured-1.771509
  5. ↑ http://www.rte.ie/tv/latelate/20110916.html
  6. 1 2 3 "Cystic fibrosis patients transferred to new €22m facility at St Vincent's". RTÉ News. 30 July 2012. Archived from the original on 9 November 2015. Retrieved 9 November 2015.
  7. ↑ http://www.eveningecho.ie/cork-news/cystic-fribosis-unit-to-finally-open-at-cuh-after-months-of-delay/1123211/
  8. ↑ http://www.clare.fm/news/new-adult-cystic-fibrosis-unit-be-opened-regions-main-hospital-today
  9. 1 2 "Galas 2013 Winners". Queerid. 28 February 2013.
  10. ↑ http://www.rte.ie/news/player/2013/0201/3479561-cf-campaigner-orla-tinsley-discusses-the-approval-of-new-cf-drug/
  11. ↑ http://health.gov.ie/blog/press-release/new-cystic-fibrosis-drug-ivacaftor-kalydeco-to-be-made-available-for-irish-patients/
  12. ↑ "A Study of Lumacaftor in Combination With Ivacaftor in Cystic Fibrosis Subjects Aged 12 Years and Older Who Are Homozygous for the F508del-CFTR Mutation (TRANSPORT)". U.S. National Library of Medicine.
  13. ↑ "Irish Healthcare Centre Awards 2013". Commercial Media Group. 2013. Archived from the original on 9 November 2015. Retrieved 9 November 2015.
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