
Tal Golesworthy lives with Marfan syndrome, which is characterized by long bones, flexible joints, eye problems, and, most threateningly, weakness at the root of the aorta. Over time, this major blood vessel becomes enlarged and, if left untreated, ruptures. Clinicians told Golesworthy he had few options, none of them attractive: wait and potentially experience a fatal aneurysm or submit to a six-hour surgery requiring a heart-lung bypass and a lifetime of anticoagulant drugs, which bring their own challenges.
But, in the lexicon of my book Rebel Health, Golesworthy is a Solver. He can’t help but take things apart and try to put them back together, better.
As a process engineer who specialized in boilers and incinerators, Golesworthy looked at the dilation of the heart valve as essentially a plumbing problem. Why couldn’t we wrap some strong material around the bulging aorta to support it externally? And indeed, we could. He invented the ExoVasc® PEARS (Personalised External Aortic Root Support) and worked with a team of engineers and surgeons to bring it to market (after many challenging twists and turns). Golesworthy himself was the first person to have one implanted.
A few lessons from this inspiring story:
1) Good ideas can come from anyone, anytime. Patients, survivors, and caregivers should step into their power and be supported as innovators.
2) Mainstream health care needs to be ready to listen to unexpected voices. Golesworthy buttonholed a clinician speaking at a Marfan syndrome conference. Happily, Tom Treasure listened and became a key collaborator.
3) Kill the jargon and watch out for assumptions. Multidisciplinary teams can get hung up by misunderstandings. Use plain language, not acronyms, and make sure everyone is looking at a problem from the same angle (literally one of the issues that Golesworthy discovered: engineers look at a device top-down, surgeons look bottom-up).
One thousand Marfan patients have now been surgically fitted with a custom-made, life-extending device that was designed by one of their own.
Intrigued? Watch Tal Golesworthy’s TED talk or read “The engineer who fixed his own heart,” by Geoff Watts. Or pick up a copy of my book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, to learn more about Solvers like Golesworthy.
Note: This is a cross-post from my LinkedIn newsletter (which you can subscribe to here). I recently pulled all the Wow! How? Health posts over onto this blog so that there’s a complete record of my ideas on this site.
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