AFTER 25 years of dreaming of being able to see again, it was the cruellest of twists.
As he sat and waited for a doctor in a German clinic to inject stem cells into his spine – the basis of a treatment that was so pioneering that his UK specialist had warned him against undergoing it – James Logan thought his time may be about to com
e.
"The doctor was German and I asked when I would be able to see. She said: 'In four hours'. I thought this was brilliant."
The 46-year-old civil servant, lay horizontally, so as not to upset the spine where the stem cells had been inserted, and waited.
"I was in the room for eight hours," he recalls, during which time he intermittently checked how time was unfolding on his speaking watch.
"I started worrying, trying to work out if it was getting better or not."
When the doctor eventually returned, a full eight hours later, it became clear a problem had been caused by the language barrier.
"There was a miscommunication," says James ruefully. "I didn't realise she meant she would come back and see me in four hours."
James was then told it would take six weeks for the stem cells to work – an incubation period – and then a further nine months to judge the effects.
He never dared be so optimistic again.
A year on from the visit, he has had to accept the medical experts were right to doubt – he has experienced no improvement in his sight.
Looking back, James, from Meadowbank, who has worked as a support officer at Registers of Scotland for 25 years, is philosophical.
"I was more hopeful than anything," he says. "I was the first person to receive this treatment and it was experimental.
"I was hoping for anything to improve, any improvement would have been a bonus.
"I just kept thinking throughout the whole time that if it worked great, but if not I would have been so happy to have gone in the first place.
"If I had not gone I would have been sitting, thinking if only. As it was a nine-month period and not overnight, I was more prepared."
The visit to the Institute for Regenerative Medicine in Cologne was the culmination of years of yearning – James lost his sight at the age of 21 due to a genetic disorder – and months of fervent fundraising.
His friends and family helped raise £14,000 for stem cells to be taken from his hip and inserted into the base of his spine to try and repair his optic nerve.
Some might feel dejected or cheated at the lack of results, James though has kept in touch with the clinic and is considering returning.
He is waiting on the outcome of tests and admits he would gladly sell his house to pay for the treatment if they give any indication that it might work.
Although some may see this as a sign of desperation, James is nothing if not a realist. He knows that the one thing he wants more than anything else in the world is to be able to see again. It's as simple as that.
"If someone told me I was grasping at straws, I would ask them one question: 'Are you blind?' If they were blind, fair enough, but if they were not they can't know."
Barely into adulthood, James developed Leber's Hereditary Optic Neuropathy, a condition for which there was then no known cure – and, according to most experts, there still isn't.
It must have been a devastating blow, but he had accepted this was his fate, until his sister saw a TV programme about a man with the same condition who was about to undergo a revolutionary treatment.
"There was nothing until then," says James. "That was the first time a cure was mentioned, that was why I went for it with such gusto."
So earnestly did he and his supporters set about raising the £14,000 needed he was able to leapfrog the man featured in the documentary and became first in the queue to be treated.
Friends, relatives, workmates and even Hibernian Football Club, where he has a season ticket, lent their support to help raise the money. It is only weeks since it became clear that the treatment had totally failed, but Mr Logan is already thinking about the future.
He has been told a slot is available for him in mid-June if he wants to undergo a new operation at the same institute, and is waiting to hear if clinical trials prove successful.
He has heard positive things through an informal network of other Leber's sufferers, but is cautious when it comes to speculating about what might happen.
"I have been told that someone who has had the treatment has had an improvement within a month," he says.
"I don't know if that's true yet. No-one has ever recovered from this condition and I had no improvement at all, just 48 hours of severe pain, the worst I've ever endured in my life, but I would be willing to go through that again."
The latest treatment apparently involves inserting stem cells directly into the optic nerve area rather than the base of the spine.
This would mean there is less distance for the cells to travel and less time for the body's immune system to attack the foreign cells.
Patrick Yu Wai Man, one of the UK's leading experts in Leber's atrophy, who is based at the Department of Ophthalmology at the University of Newcastle-upon-Tyne, was the man who initially warned James against the first treatment.
He is equally adamant today. "There's been a lot of research into the mechanisms by which it leads to blindness, but we do not have a treatment that works," he says.
"There has been no stem cell therapy work by any researcher that I know about, I can be quite clear on that."
Monday's vote in the House of Commons to allow the creation of hybrid embryos may eventually lead to other stem cell breakthroughs, but such developments are still many years away.
For now though, James is unperturbed. He does not yet know how much a new operation might cost, but he is in no doubt that, if it had a chance of working, he would find the money.
"I would sell my house, I would sell everything I own, if necessary. You cannot put a price on getting your sight back.
"It's just a pipe dream at the moment, but if it has proved a success for someone else, I will be next in the queue, guaranteed."
THE THEORY BEHIND THE STEM CELL TREATMENT CORD blood stem cells are given by injection, usually to the neck, the back or the arms.
The patient's nervous system is then flooded with about one million of these restorative cells.
In James Logan's case, the stem cells should attach themselves to the optic nerve, where they begin to repair the damaged tissue.
Stem cells develop into the appropriate nerve tissue, and function as the original optic nerve should have. With this renewal complete, the patient's sight is restored.
But some experts say an immune system will recognise the new cells as foreign bodies and destroy them.
There is also a theory that if the optic nerve is damaged for more than three months, it could be beyond repair.
Some scientists also say that given the physical length of the optic nerve, it would be hard to repair its entire length.
Weblinks:www.xcell-center.comhttp://www.ncl.ac.ukThe full article contains 1291 words and appears in Edinburgh Evening News newspaper.
