Further Reading

Medical papers

• "External aortic root support for Marfan syndrome: early clinical results in the first 20 recipients with a bespoke implant"
  Journal of the Royal Society of Medicine, July 2010, John Pepper, KM John Chan, Jemyrr Gavino, Tal Golesworthy, Raad Mohiaddin, Tom Treasure
• "A Patient’s Journey: External aortic support for people with Marfan’s syndrome"
  British Medical Journal, May 2010, Camilla Allen and John Pepper
• "The evolution of aortic root surgery for Marfan syndrome"
  Interactive CardioVascular and Thoracic Surgery, March 2010, Tom Treasure
• "Manufacturing and placing a bespoke support for the Marfan aortic root: description of the method and technical results and status at one year for the first ten patients"
  Interactive CardioVascular and Thoracic Surgery, March 2010, John R. Pepper, Tal Golesworthy, Martin Utley, John Chan, Skandadas Ganeshlingam, Michael Lamperth, Raad Mohiaddin, and Tom Treasure
• "Unknown unknowns: the aorta through the looking glass"
  European Journal of Cardio-Thoracic Surgery, June 2008, Tom Treasure, Tal Golesworthy, Warren Thornton, Michael Lamperth, Raad Mohiaddin, Robert H. Anderson, Steve Gallivan and John Pepper
• "Reducing fear and the risk of death in Marfan syndrome: a Chaucerian pilgrimage"
  The British Journal of Cardiology, July/August 2006, Tal Golesworthy, Tom Treasure, Michael Lampérth, John Pepper
• "The Tailor of Gloucester: a jacket for the Marfan aorta"
  The Lancet, October 2004, Tal Golesworthy, Michael Lamperth, Raad Mohiaddin, John Pepper, Warren Thornton, Tom Treasure (the link takes you to The Lancet's website where you can read this paper, although you will need to complete the free registration process to do so)

Presentations

• The External Aortic Root Support Project and the Exostent
  Marfan Association UK Information Day, 13 March 2010
  St George's Hospital, London
• The External Aortic Root Support Project and the Exostent
  Marfan Association UK Information Day, 7 March 2009
  St George's Hospital, London
• The External Aortic Root Support Project and the Exostent
  Marfan Association UK Information Day, 8 March 2008
  St George's Hospital, London

Press coverage

• They wrapped my heart in a bandage
  Take a Break’s Autumn 1 Special, August 2010
• To the heart of the matter – CRDM employs rapid manufacturing for a cardio vascular implant
  The TCT Magazine, June 2010
• The perfect fit: when you are making a device to repair blood vessels, it has to be right first time
  Professional Engineering, 10 February 2010
• Heart operation
  ITV Points West, 26 January 2010 (you will need Adobe Flash Player to view this video: you can download this free of charge at http://get.adobe.com/flashplayer/)
• The engineer who saved his own life with polyester
  The Week, 16 January 2010
• Engineer who designed his own lifesaving heart-repair kit
  Mail on Sunday, 16 January 2010
  
• Heart defect sufferer designs his own repair kit
  Five News, Five, 12 January 2010
• Patient's heart 'repair kit' treats 19 other sufferers
  Western Daily Press, 4 January 2010
• Engineer saves own life by making surgical heart-repair kit... and now others will benefit from his invention
  Daily Mail, 4 January 2010
• Engineer shows surgeons better way to fix his heart
  Sunday Times, 3 January 2010

Websites

There are numerous foundations and associations dedicated to supporting individuals and families affected by Marfan syndrome. These organisations are a valuable source of information and practical and emotional support.

International Federation of Marfan Syndrome Organizations (IFMSO)

www.marfanworld.org