- Tal Golesworthy has Marfan syndrome – a disorder of the body’s connective tissue that can cause the aorta to split, resulting in sudden death
- He invented a made-to-measure polyester sleeve to fit around his aorta
- He persuaded surgeons to try it out on him and it was so successful it has been used to treat 40 other people in London, Oxford and Belgium
- Mr Golesworthy is now hoping a trial will be carried out to compare it to more conventional therapy
A patient who used his engineering skills to repair his own heart defect has helped save the lives of 40 people.
Tal Golesworthy, 57, suffers from Marfan syndrome, a genetic, life-threatening condition that left his aorta – the largest artery – in danger of splitting.
But faced with gruelling surgery and a lifetime on blood-thinning drugs, he designed himself a made-to-measure knitted polyester sleeve to fit around his aorta.
Tal Golesworthy, 57, suffers from Marfan syndrome, a genetic, life-threatening condition that left his main artery in danger of splitting. He designed himself a made-to-measure knitted polyester sleeve to fit around the artery
He persuaded doctors to use him as a guinea pig – and the ground-breaking procedure was a complete success.
Inspired by its success, Mr Golesworthy and a team of surgeons decided to make the technology available to other patients.
To date, more than 40 patients – the youngest being just 16 – have had their own individually designed surgical sleeve fitted in London, the John Radcliffe Hospital, in Oxford, and the Leuven University Hospital in Belgium.
Mr Golesworthy is now calling on surgeons across Europe to start a trial to test his device against more conventional therapy.
Around 12,000 people in Britain suffer from Marfan syndrome, a genetic defect which causes abnormal growth of bones and weakness of connective tissue.
This leaves the neck of the aorta – the main artery in the heart for carrying oxygenated blood – stretched dangerously thin.
He invented a polyester sleeve to fit around his aorta and persuaded surgeons to try it on him. It was so successful that it has now been used to treat 40 other people
A normal aorta has a diameter of around one-and-a-half inches, but in Marfan syndrome sufferers this can weaken and stretch to a staggering four inches wide.
If the aorta splits, it is often fatal.
Each sleeve is created using scans of the individual patient’s aorta and computer-assisted drawing to produce a bespoke device.
Mr Golesworthy, of Tewkesbury, Gloucestershire, designed the sleeve because he had severe concerns about the old-style surgery that would have left him on anticoagulant drugs for the rest of his life to prevent blood clots.
The conventional surgery involves either repairing or replacing the aorta but has to be carried out before it becomes too weak.
Mr Golesworthy is now calling on surgeons across Europe to start a trial to test his device against more conventional therapy
He said: ‘I just thought the operation sounded awful. The doctors were being asked to do an engineering job when they weren’t engineers. I decided there had to be a better way.’
Mr Golesworthy, who markets the device through his firm Exstent, became the first recipient of his own brainchild called EARS – external aortic root support – on 24 May 2004 at London’s Royal Brompton Hospital.
Nine years on from his two-hour operation his aorta has not grown in size.
He said: ‘All of a sudden my aorta is now fixed, I began to breathe easy and sleep well and relax in a way that I hadn’t done for years and years before.
‘To conceive of the idea of an external support was easy, there are any number of armchair inventors about.
‘To build technical and commercial teams, raise the finance, run the project and volunteer to be the first patient was not so easy, particularly as I was trying to operate as a rational project manager when I knew the outcome of the project could have such a profound impact on my future health.’
More than nine years after having the pioneering operation, Mr Golesworthy said his life has been transformed as he no longer has to take any medications and he can live a ‘normal’ life
But more than nine years after having the pioneering operation, Mr Golesworthy said his life has been transformed.
The research and development engineer in the areas of combustion and air pollution control, added: ‘I take no prescription drugs, in particular I am not dependent on anti-coagulation.
‘I am living a life so “normal” that all the usual banalities have crowded in to irritate, work, money, the health of other family members, etcetera, but I have a freedom and emancipation that only an experience as profound as cardiothoracic surgery (or similar) can bring.
‘Since the operation I have been living a completely normal life, drinking alcohol when I feel like it and not taking anti-coagulant drugs.
Each sleeve is created using scans of the individual patient’s aorta and computer-assisted drawing to produce a bespoke device
‘I don’t have to worry anymore because everything works fine. The stress and worry used to be horrendous but all that has been removed.’
Andrew Ellis, 27, a keen footballer, has benefited from Mr Golesworthy’s inventiveness.
Five years after his surgery he remains fit and healthy and ‘feels like someone without a heart condition’.
‘Tal’s invention has taken away the looming threat of a major operation that was hanging over me for so long,’ he said.
Mr Golesworthy was able to apply his engineering skills to develop the life-saving sleeve with medical advice from Professor John Pepper and Professor Tom Treasure.
He lives with wife Teresa, 55, but revealed he does not have any children because Marfan syndrome is genetically transmitted.
Professor Graham Cooper, consultant cardiac surgeon at Sheffield Teaching Hospital NHS Trust, said it would be a long time before the operation was rolled out.
He said: ‘We have been doing the traditional operation for over 20 years and it is proven to be very safe and effective – we know it stops people from dying.
‘This new operation may have some advantages – it may mean patients have less time in hospital and undergo a less complex procedure – but it will still be a long time before we have the data to compare different approaches.’
WHAT IS MARFAN SYNDROME?
Marfan syndrome is a disorder of the body’s connective tissues.
Children usually inherit the condition from one of their parents – if a person has the syndrome there is a one in two chance of their child having it.
Some people develop it despite not having a parent with the condition.
Some people are only mildly affected while others develop serious symptoms.
Typical characteristics include being tall, having abnormally long fingers, heart defects and eye problems.
A person with the syndrome does not have enough of a protein called fibrillin in their connective tissue.
This means parts of their body can stretch abnormally when put under stress.
The defective fibrilllin gene also causes some bones to grow longer than they should.
There is no cure so treatment focuses on managing the symptoms.
The life expectancy of people with the condition is reduced if their heart or aorta is affected.
Marfan syndrome affects about one in 5,000 people.
Source: NHS Choices