Jonathan

"We'd never heard of Marfan syndrome before Jonny died”.
Jonny was just 23 when he suffered a fatal dissection. The underlying cause was later revealed as Marfan syndrome. Looking back, the signs and symptoms of the condition were apparent all along but no one had joined the dots. Jonny’s family and friends have since tirelessly raised funds and awareness for the Trust and Marfan syndrome.

Jonny's Story

"We'd never heard of Marfan syndrome before Jonny died, and now we have people coming up to us, asking questions about it. The generosity of people has been fantastic and we've raised almost £5,000 already, in Jonny's memory.”

Jonathan Edwards was a fit and healthy man. He was living a full and lively life. He died suddenly and unexpectedly from an aneurysm. He was 23. It was discovered posthumously that Jonathan - 'Jonny' - had Marfan syndrome. In retrospect the signs and symptoms were there all along, but no one “joined the dots”.

As his relatives say: “Jonny was tall and thin, his rib cage stuck out (pigeon chest), his toes curled, he had stretch marks on his back and he was able to touch his wrist with his thumb. His wing span was longer than his height. Had we, or the doctors, heard of Marfan syndrome, we may have been able to join the dots. Jonny would have been tested, and probably undergone surgery.”

As a child ‘Jonny’ had a bad chest and asthma. At 16 he spent time on the Ear Nose and Throat Ward of his local hospital, recovering from an operation on his ear which antibiotics had failed to clear up.  The ward was one that treated Marfan patients, yet Jonny remained undiagnosed during his stay, and his condition hid in plain sight.