By Julian Gavaghan

Last updated at 11:00 AM on 13th February 2012

Twin brothers have told of their ‘devastation’ after both dramatically lost their sight to a rare condition that affects just a few hundred people.

Michael and Dan Smith, 20, are still determined to finish university and get good jobs after being left almost totally blind by Leber's Optic Neuropathy.

Michael, who is in football training for this year's Paralympic Games, lost his sight in a matter of weeks while in his first year at Bart's and the London School of Medicine.

Rare condition: Dan (left) and Michael Smith suffer from Leber's optic Neuropathy

Less than a year later, his brother Dan suffered the same fate while in his second year studying aeronautical engineering at the University of Bristol.

The identical pair, who can only make out shadowy shapes, have been forced to adapt their lives, learning Braille and re-learning how to cook and choose clothes.

They also plan to embark on a 350-mile tandem bike ride from London to Amsterdam in April.

Michael first noted changes to his vision in November 2009, forcing him into the ‘crushing’ realisation he could not continue his degree in medicine.

WHAT EXACTLY IS LEBER'S OPTIC NEUROPATHY?

Leber's Optic Neuropathy is a hereditary condition passed on by the mother’s genes.

The genetic defect, which can lead to optic nerve damage – or neuropathy, is carried by roughly one in every 9,000 people.

But genes, which can cause eye cells to die off quickly, can pass though several generations without triggering the condition.

Around 50 per cent of men and 80 per cent of women with it will suffer no loss of vision. No reason is known for the difference between the sexes.

In the Smith brothers’ case, they have been unable to find any family history of sudden onset blindness going back four generations.

The main symptom is the sudden loss of vision, which is caused by a death of cells in the optic nerve responsible for relaying visual information from the eyes to the brain.

Once cells start dying, affected eyes will begin seeing colours that appear more washed out. Within a period of eight weeks, it can lead to near or total blindness.

In many cases, only one eye is affected and patients may not be aware of the loss of colour vision until the doctor asks them to cover the healthy eye.

Most of the time, however, both eyes are affected. Sometimes vision improves, although this is very unusual.

‘My symptoms came on suddenly - one day I was in a lecture and I could not make out the projector in front of me, it was really hazy,’ he said.

‘I lost 70 per cent to 80 per cent of vision in my left eye in a very short space of time.

'I continued at medical school for a couple of weeks but it was taking me half an hour to read a page of A4 and I was breaking down in tears.

‘I did not know what was happening to me. I could not recognise people's faces and I quickly lost my independence.’

A genetic test eventually revealed Michael was suffering from the rare genetic condition, which also caused rapid sight loss in his right eye.

‘It was the end of life as I knew it,’ he said. ‘I could not carry on at medical school and that was incredibly distressing. In fact, it was crushing.

‘I can never describe how devastating it was to give up on medicine.

‘Not only that but I couldn't go for a run on my own without it being dangerous, I could not prepare food, I did not know what I was wearing.’

Dan also ‘could not comprehend what was happening’ when he heard Michael's news.

‘Michael has been the closest person to me all my life and this struck him in his first week at university,’ he said. ‘It was incredibly hard to see this happening to my brother.

‘He called me to say he thought something was wrong - he wasn't able to recognise people but didn't know why. That conversation still haunts me.

‘Doctors initially thought he had a brain tumour but tests revealed that he had this rare genetic disorder.

‘The whole family was devastated as we tried to comprehend what had happened.

‘It was the cruellest of timing because it was my brother's first term at medical school and he had his whole life ahead of him.’

But further terrible news was still to come. Because the pair are identical twins, Dan was told he had a 60 per cent to 70 per cent chance of also going blind.

Optic neuropathy: Cracks show nerve damage in the eye, caused by cells dying

‘Knowing I could lose my sight was psychologically very, very tough,’ he said.

‘Leber's Optic Neuropathy is known as 'The Sword of Damocles', based on the Greek parable, because your life goes from being great, in a period of heightened happiness, to hitting rock bottom in an instance.

‘I had a pretty tough time knowing that this dark cloud was hanging over me during my first two years at university.

‘It was effectively like sitting on a time bomb that could have gone off at any moment.’

In Easter 2010, Dan began to lose sight in his left eye and within three weeks there was also ‘full scale deterioration’ in his right eye.

Michael said: ‘Once I was diagnosed, the one thing I wanted in life was for this not to happen to my brother too.’

Although Leber's Optic Neuropathy is a hereditary condition, the brothers have been unable to find any family history going back four generations.

The twins, from Barnet, north London, can now make out shadows but use white canes to help them move around.

It is not known if they will lose their remaining sight but their condition is extremely unlikely to improve.

Nevertheless, they are determined to live life to the full. Michael is now studying geography at King's College London and wants to be a disability lawyer when he graduates.

Dan is still studying aeronautical engineering and aims to go into investment banking.

Michael said: ‘The last two years have been the most difficult but also the most exciting of my life.

‘We have had to learn new skills such as Braille and a new computer language that coverts text to speech. In lectures, we have note-takers.

‘Everything is through touch now, I select clothes through touch and texture and cooking is through touch and smell.

‘I thought I would never smile again, but we wanted our lives back.’

Damage: The normally smooth contour of the retina has large black areas where photoreceptors have been lost due to the macular degeneration

Michael plays for the England blind football team and is hoping to get picked for this year's Paralympic Games.

‘It's incredibly competitive but I'm training all the time,’ he said.

The Arsenal fans will undertake the London-Amsterdam tandem bike ride on April 6 to raise awareness of their condition.

They hope to raise over ?3,000 for Blind in Business, a charity which helps blind and partially sighted people into work.

Dan Mitchell, training and fundraising manager at Blind in Business, said: ‘Having the Smith brothers embark on such a challenging journey to raise money for this small charity shows they always want to work towards bigger challenges.

‘They have both been challenged academically and have pushed themselves as visually impaired people, working towards careers in engineering and law.’

Leber's Optic Neuropathy mostly strikes young men and is caused by complex genetic defects.

Vision loss results from the death of cells in the optic nerve responsible for relaying visual information from the eyes to the brain.

Although central vision gradually improves in a small number of cases, for most people vision loss is permanent.

Michael and Dan can be sponsored via http://www.justgiving.com/sevenmenfivebikes.

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Twin brothers' devastation after both rapidly lost their sight due to rare genetic condition

In Remaking Eden (Harper Perennial, 1998), geneticist Lee Silver envisioned a future in which humanity has split into two species: “Naturals,” the poor slobs who muddle along with the genes that nature gave them, and the “GenRich,” who can afford to boost their physical and mental talents via genetic engineering. Silver warns that over time, “the genetic distance between the Naturals and the GenRich has become greater and greater, and now there is little movement up from the Natural to GenRich class.”

We don’t have to wait until science catches up to science fiction for this unjust dystopia to be realized. It’s happening now, in the United States, as a result of policies that favor the rich at the expense of un-rich. Scholars are confirming with empirical studies what Occupy Wall Street protesters have been saying: our system is unfairly rigged in favor of the haves, who keep pulling away from have-nots.

Education can help the poor climb their way to a higher socioeconomic status. But according to Sabrina Tavernise of The New York Times, several studies have shown that “the achievement gap between rich and poor children is widening, a development that threatens to dilute education’s leveling effects.”

Race plays less of a role than it once did in this widening chasm. A study published last year by sociologist Sean Reardon found that the difference between standardized test scores of blacks and whites has narrowed since 1960, while the difference between low-income and wealthy students has surged 40 percent. “We have moved from a society in the 1950s and 1960s,” Reardon told The Times, “in which race was more consequential than family income, to one today in which family income appears to be more determinative of educational success than race.”

The simplest explanation for the divide is that the rich can afford to send their children to better schools, hire private tutors for them and give them other advantages. In 1972, affluent parents spent five times as much on their children, on average, as low-income parents; by 2007, that difference had almost doubled, to nine to one. “The pattern of privileged families today is intensive cultivation,” sociologist Frank Furstenberg told The Times.

The federal tax code is also stacked against the poor. The code caps taxes on long-term capital gains and dividends at 15 percent, which is why Mitt Romney is taxed at a lower rate than a grade-school teacher. Far from being progressive, with percentages rising with income, the tax code is regressive in this key area. Those who work for a living pay more in taxes, percentage-wise, than those who live off investments.

Political scientist Andrew Hacker documents the depths of our inequality in “We’re More Unequal Than You Think,” in The New York Review of Books this month. He estimates that since 1985 “the lower 60 percent of households have lost $4 trillion, most of which has ascended to the top 5 percent.” U.S. economic policies, Hacker says, now serve as a “giant vacuum cleaner” sucking money from low-income people and showering it upon the rich.

Economists quantify the inequality of a society on a scale called the Gini index. If everyone has the same income, the Gini index is zero; if one person makes all the moola, the Gini index is one. The U.S. Gini index has risen from .359 in 1972 to .440 in 2010, an increase of more than 20 percent, Hacker reports. In contrast, the Gini index of socialist Sweden is .230.

Hacker notes that “in a not-so-distant past, families of modest means made enough to put something aside for their children’s college fees. That cushion is gone, which is why millions of undergraduates are now forced to take much larger loans. Adding interest and penalties, many will face decades paying off six-figure debts.” (I’m facing this financial challenge myself; my son is entering college next fall and my daughter a year later.)

The U.S. exemplifies the Matthew effect, a sociological term that alludes to a passage in the Gospel of Matthew: “For to all those who have, more will be given, and they will have an abundance; but from those who have nothing, even what they have will be taken away.”

Our current presidential race features several Christian candidates—Rick Santorum, Newt Gingrich and Romney—who seem to view the Matthew effect as the Eleventh Commandment. These men trumpet their religiosity and rectitude, and yet they advocate economic policies that benefit the rich and hurt the poor, violating the most basic rules of moral decency. Naturals must join together with rich people with a conscience to create a more economically just society.

Image courtesy Wikimedia Commons, http://www.flickr.com/tracy_olson.

Link:
Education Isn't Helping Americans Overcome Deepening Inequality