UK Keratoconus Self-Help and Support Association
It started when he was a teenager, with a gradual deterioration of his sight - first in his right eye and then in his left.
But Jonathan Pickles was already short-sighted, and at first he thought the blurred vision was connected to that.
It wasn't until he went to get his eyes tested at 18 that he found the symptoms pointed to a rare eye condition that would leave him needing cornea transplants in both eyes.
Jonathan was diagnosed with keratoconus - a degenerative disorder which causes the cornea to become very thin and bulge forward in an irregular shape.
The sufferer's eyesight becomes progressively worse - an experience that Jonathan became familiar with over the next nine years.
"At the stage I was diagnosed the condition wasn't stopping me doing anything," said Jonathan, who is now 27 and lives in Nottingham
"But then my eyesight deteriorated quite quickly."
He found that his glasses no longer worked, and he was prescribed hard contact lenses that would float on the surface of his eye. They did little to help the condition.
"They were incredibly painful," he remembers.
"I was putting the lens on to quite a steep bulge on my eye, and quite often they would fall out.
"And when they were in they would actually rub against the eye, which was very irritating."
And as his eyesight became worse, it started to affect the rest of his life.
Faces would be blurred and unrecognisable if they were more than a few feet away, which caused problems at university, and later on, in the workplace.
"I'm sure people thought I was rude, ignoring them if they weren't right next to me, but I literally couldn't see them," said Jonathan.
"And it affected me socially. I would go to meet friends in bars and would be wandering round for ages looking like an idiot before I could find them.
"It does have an impact on your confidence."
The condition also had physical implications.
"I used to play rugby at university," he added.
"It got to the point where the ball would go into the air and I'd lose track of it. I'd be looking up, blinking, waiting for it to come back down and hit me on the head."
But the main effects of the condition were anger and frustration.
"I did get down sometimes, it did make me feel depressed," admitted Jonathan.
"But the main emotion was anger. I used to get angry that I couldn't see the TV if I was sat right in front of it, or that I couldn't see people across the table during meetings at work."
The cause of keratoconus is not known, although it is thought it could be a genetic disorder.
The occurrence of the condition in the population is between one in 3,000 to one in 10,000 people.
Treatment for keratoconus is limited.
Sufferers can use specially-fitted contact lenses, which can be adapted as the cornea steepens, or undergo surgery - including cornea transplants.
This was the option presented to Jonathan.
He was offered the chance of a corneal graft on his right eye in the summer of 2000, but did not undergo surgery until the tissue was available in October, 2002.
Jonathan's cornea was removed by eye surgeons at the Queen's Medical Centre, Nottingham and a donor cornea stitched into its place.
The prospect of surgery didn't sit too well with Jonathan at first, but the benefits far outweighed the worry.
"I was really nervous, up to the point when I was on the trolley going in to the operation thinking, 'I'm going to jump off and leave.'
"But the surgery made a big improvement immediately. My eyesight still wasn't perfect but the difference was huge.
"And I had excellent care from the team at the QMC."
Now Jonathan is waiting for the same operation on his left eye, but has been told that the tissue needed for the transplant will not be available until late 2005 due to lack of donors.
He is calling for more people to carry donor cards, in the hope of shortening the waiting lists for treatment to his and countless other conditions needing transplants.
"I carry a donor card, I think it's important," he said.
"I would never hassle anyone into it - I'm not constantly on at my friends to sign the form - but I would ask people to consider carrying the card.
"And I know it's not a pleasant thing to think about, what happens to your body after you've died.
"But the fact that someone did has made a real difference to my life."
And he wants to raise awareness of the condition.
"I've never met anyone else who suffers from this, and the condition can be difficult to diagnose," he said.
Following the transplant, Jonathan has had to make some changes to his lifestyle.
He can no longer play contact sports in case his eye gets damaged - which rules out his beloved rugby.
But he has taken the changes in his stride.
"It is a disappointment that I can't play any more," Jonathan admitted. "But I've just learned that you have got to live with it and not let it worry you.
"I consider myself very lucky that I've had one eye treated. I've had the best care available.
"Without that I would be disabled with a severe visual impairment."
For information on the disorder, contact the Keratoconus Support Group on 020-8993 4759.
For information on donor cards call 0845 60 60 400.
Gifts of sight
Each year, more than 2,200 people have their sight corrected by cornea transplants in the UK.
The first successful cornea transplant was reported in the Czech Republic, in 1905. Around 2,000 people donate their corneas on death each year but there is still a shortage in the UK.
More than 37,500 cornea transplants have been recorded on the National Transplant Database since the Corneal Transplant Service began.
The oldest recorded cornea donor was 103.
Up to 100 cornea operations take place each year at the Queen's Medical Centre, Nottingham, each year.
There are often long waits for corneal transplants as donated eyes are few and far between.
Last year, just 34 eyes were retrieved at the QMC and specialists have appealed for more people to carry a donor card and make their eyes available after death.
Most people can become donors and there is no upper age limit.
Eyes can be retrieved up to 24 hours after death and are then transported to eye banks in Bristol or Manchester, where they are preserved until used.
Condition has an unknown cause
Keratoconus, meaning 'cone shaped,' describes a condition in which the cornea - the clear front window of the eye - becomes thin and protrudes. This abnormal shape can cause serious distortion of visual images.
Frequent changing of glasses or contact lens prescriptions
The cause of keratoconus is unknown. It usually appears in a patient during their late teens or early 20s. The disease slowly progresses for ten to 20 years as the cornea steepens and scars. Although both eyes may be affected, one eye is usually worse than the other.
Vigorous eye rubbing can add to the disease process and patients with keratoconus are advised to avoid rubbing their eyes.
Although there are no medicines known which will prevent progression of the disease, mild cases of keratoconus can be successfully treated with glasses or specially designed contact lenses. When vision is no longer satisfactory with glasses or contact lenses, a corneal transplant may be recommended.