Useful Resources

Videos from "Living with Marfan Syndrome” by the Royal Society of Medicine
View nine useful videos from “Living with Marfan Syndrome” as part of the Medicine and Me lecture series run by the Royal Society of Medicine.
The Medicine and Me series provides updates on all important conditions and gives a direct voice to patients and their carers to air their concerns on the impact of diagnosis, investigation and management. To mention a few, Planning a family; Marfan Syndrome in the future; Ophthalmic Problems and Solutions. 
 
Spiderhands: An incredible essay called “Spider Hands” by Alex J. Coyne
This Essay details how Marfan Syndrome frustrated a man’s music career but led to a new writing career, which helped him see the connective tissue flowing through everything. First published in Folks Magazine. 
 
Lu's life in a blog: Just a girl with a rare disease and coloured eyeliner
In her blog, Lu discusses life with Chronic Health problems: “When I first received my Marfan Syndrome diagnosis many years ago, I felt like I had been given a death sentence. No word of a lie, I thought the Doctor was trying to tell me I was about to die". 
  
Research Papers: 
Pectus updates and Special Considerations in Marfan Syndrome. Stephanie Fraser, Anne Child and Ian Hunt.  
 
Gastrointestinal Manifestations of Marfan Syndrome, Nashiz Inayet, Jamal Hayat, Andrew Poullis, Maite Tome and Anne Child. 
 
Non - Cardiac Manifestations of Marfan Syndrome. Anne Child. Ann Cardiothorac Surg 2017;6 (6):599-609. doi; 10.21037/acs.2017.10.02. Full Text (video)
 
Fate of the Aortic Arch following Surgery on Aortic Root and Ascending Aorta in Bicuspid Aortic Valve. 19 March 2018. Published in the Annals of Cardiothoracic Surgery  2018. Rajdeep Bikhu, et al.  
 
 
Useful Resources
← Back to News