Taliesin Golesworthy, the Inventor of Treatment of His Own Disease

Abstract

Tal Golesworthy was first diagnosed with Marfan syndrome as a 5-year-old at the ophthalmic department of his local NHS hospital in 1962. Like his father, he had characteristic subluxated lenses. As the years passed, apart from height, he thought nothing more of Marfan syndrome until, in 1992, he attended a genetic study at St. Georges Hospital in London. At this examination he was first made aware of his aortic dilation and informed that his aortic root was already at 4.4 cm and would need annual monitoring and probably surgical intervention at some point in the future. The psychological unease this caused was compounded year on year as his aorta steadily dilated. By 2000, when he was 43 years old, his aorta had reached 5.0 cm and he was forced, finally, to face his fear of a total root replacement by conceiving of a personalised external support. He once again went to St. Georges Hospital in March 2000, this time to an Information Day run by the Marfan Association, a patient support group, where Professor Tom Treasure was presenting on aortic root surgery. At the end of Tom’s presentation he raised his arm and asked why we were not imaging the aorta, making a Computer Aided Design (CAD) model of it, using this to manufacture a physical model, using Rapid Prototyping, and there from a bespoke external support that would contain and fit the patient’s aorta. Tom engaged immediately and began with Tal what has become the defining R&D project of his life.