Bristol student lost his sight over night - just like his twin brother
David Clensy meets the Bristol student who lost his sight as a result of a rare genetic condition, just two years after his twin brother endured the same trauma
It is the stuff of nightmares – rapid onset blindness, where every time you fall asleep, you know you will wake up with less vision than before. But that’s exactly what Bristol University aeronautical engineering student Dan Smith went through 15 months ago, as he lost 93 per cent of his sight in a matter of days as a result of a rare hereditary condition, Leber’s optic neuropathy.
But the extraordinary thing about Dan’s traumatic experience is that he knew he was likely to be struck down by the condition, because his identical twin brother Michael went through the same thing just two years earlier.
“We had been through a lot as a family when Michael was struck down with this condition and lost his sight back in 2009,” the 21-year-old tells me, as he leads the way through the corridors of the university’s engineering department, holding his white cane folded up.
“I know my way round here so well, I don’t need to use it,” he says.
“I just carry it so I don’t have to keep explaining to people why I can’t see them. People don’t expect you to be almost entirely blind at the age of 21 – especially when you could see perfectly well for your first two years at the university.
“Michael’s sight went in his fresher’s week, just days after he’d started his medical degree in London. It was so cruel – he’d worked so hard to get to that point.
“As twins we’d been inseparable for the first 18 years of our life, and then the moment we both went to university this happened to him.
“Of course, it meant that his dream of becoming a doctor was lost immediately.”
Michael transferred to another course, studying geography at King’s College London, and he even went on to take part in last year’s Paralympics, playing in the England Paralympic football team.
“The doctors were watching me very carefully, because it is an hereditary condition, though there is no sign of it in our immediate family history, but of course I have exactly the same genetic make-up as Michael.
“The condition affects men in their late teens and early 20s, although it’s very rare – there are only 150 people with it in the country who have lost their sight in this way.
“They had warned me that there was an 80 per cent chance that I would also lose my sight by the age of 20 – which is not very reassuring odds for a young man to come to terms with.
“The doctors don’t really understand what triggers the gene. They advised me to avoid alcohol or smoky rooms, so I didn’t have a great social life for the first two years here at Bristol – but I was able to concentrate entirely on my studies.
“I checked my vision all the time – right eye, then left eye, and for a long time it seemed fine. Then one day I was studying in the library, and I suddenly noticed I couldn’t see the numbers on my calculator properly.
“I was rushed to Moorfields Eye Hospital in London, where specialists found that my optic nerve was severely swollen, and they suspected immediately that it was Leber’s optic neuropathy starting.
“I was admitted, and two days later I suffered a catastrophic visual loss. I just woke up one morning with a lot less sight. Then it happened again the next night.
“It was terrifying to go to sleep – it was like a thief in the night was creeping in and stealing my vision.
“I had found it was a psychological torture when it was happening to Michael, and I know he felt the same when it was happening to me. There is just nothing you can do to help.
“But at least I knew that Michael’s sight didn’t go completely – it eventually stabilised at about seven per cent vision, so I was confident mine would do the same – and it did. Seven per cent may not be much, but it’s something. I have no central vision, and the little I can see in my peripheral vision is very clouded – all I can really make out is dark shapes. I can see figures beside me, but I can’t see enough facial detail to recognise who it is.”
Dan says it was a devastating blow for his parents Steve and Su-Jan to have the same tragedy strike both brothers.
“My father has been a real pillar of strength for us both,” he says. “My mother has tried to be strong too. But she finds it very difficult. I don’t think she’ll ever fully come to terms with what’s happened to us. There isn’t a day when she doesn’t cry about it. She blames herself, because this is a condition that can only pass down through the maternal line. But of course it’s not her fault.
“The good news about the fact that it can only pass down through the maternal line means it stops here for our family – there is no way that Michael and I can pass it on if we go on to have children.”
Like his brother, Dan quickly decided he needed to concentrate on his work.
“I could have gone home and cried about it, but that wouldn’t have done any good. The best thing I could do was to carry on with my studies – being busy is the best way to avoid getting depressed about it all.
“The university has been wonderfully supportive. My tuition fees are only £3,000 a year, but the department has spent at least £7,000 on equipment just for me – from computer software that reads text aloud for me, to high intensity cameras that magnify books so I can just about see pictures, everything down to fitting lips on the steps at the front of the building so I don’t trip over.
“They allowed me to split my third year over two years, to give me a bit more time to adjust to my condition, which has been fantastic, and with just a few more exams I should be graduating this June.
“But I have to be realistic, I know engineering is a very visual subject, so I know I won’t be able to do it as a career. But I’ve had a lot of help on that front from a charity called Blind In Business – they have helped to find an internship with an investment bank in London. I know that dealing in finance is something I should realistically be able to do, even though I may be visually impaired.”
Last year the brothers completed a tandem bike ride from London to Amsterdam in aid of Blind in Business, raising more than £17,000 for the charity.
Dan is hoping to get a guide dog once he leaves university, but he and Michael have also been testing a very special new kind of white stick.
The UltraCane is a new piece of technology that sends sonar waves from the stick – and when it identifies a nearby object, it translates the waves into vibrations in the handset.
“The traditional white stick is a piece of technology that hasn’t advanced in 2,000 years,” Dan says. “But as a young man, you don’t really want to walk around tapping a white stick against the pavement – at my age the embarrassment of being visually impaired can be powerful.
“So for me the UltraCane was a brilliant advancement – I can hold it quietly and feel the vibrations telling me when there is an object either side, or ahead of me, and even when there is something at height above me – a low branch or the open door of a parked lorry for example.
“It’s essentially the same as the way a bat finds its way around – you only wonder why this technology wasn’t developed earlier.
“The people behind the system even adapted it to a bike – and by using it I was able to cycle along a mountain biking course, which is pretty extraordinary. I certainly thought I would never ride a bike again – crossing the road has become a big enough challenge. But it’s in situations like mine that technology really comes into its own.”