There are many reasons why people become eye donors but each one that does fulfils a vital role at Moorfields Eye Hospital. Here Peter Belcher tells why his wife donated her eyes to research.
A simple night out on a family holiday in Sicily led to the beginning of a devastating discovery for one London family,
Describing the scene Mr Peter Belcher said: “We had two sons and we decided to go for a drink at the hotel bar which was in the basement but the room was lit by ultra violet light. My eldest son John, 12, couldn’t see when we were in there and that was the start of our journey.”
It was to be a journey that would take them to many different hospitals and finally a referral to Moorfields for genetic testing to discover the cause of the sight loss.
At that consultation Peter recalls the consultant delivered this diagnosis: “Both your sons have retinitis pigmentosa (RP) and they will be blind by the time they are 16 or 60.”
Retinitis pigmentosa is the name given to an inherited genetic condition that leads to loss of vision and blindness. It involves the death of light sensitive cells in the retina. The retina fails to function and the patient is blind even though the nerves that transmit information from the eye to the visual part of the brain still work.
The couple were stunned by the diagnosis but there was more to come. “Because of Moorfields’ interest they required my wife to have a test also and found she also had RP and that she was a carrier for the disease.”
Describing how his wife lived with RP Peter said: “She wasn’t really affected throughout her life except for the last 10-15 years when she began to walk into door posts or trip over things, we realised her peripheral vision was going and she then had regular tests. It was in the last year of her life she went blind.”
Sheila Belcher was diagnosed with RP in 1983 and it was then that she made the decision to become an eye donor.
Peter explains why: “Finding out that RP was a hereditary disease and that she had passed it onto our sons made Sheila decide she wanted to try and avoid that happening in the future to other people. She signed up to be a donor then.”
“She thought it would help to donate her eyes for research into retinitis pigmentosa and this wish I have carried out with the cooperation of the Moorfields Lions Eye Bank. I do hope that it will help with future research into the disease.”
North Londoner Esther Elliott was diagnosed with keratoconus by an optician when she was a child and has struggled with her sight ever since.
Her keratoconus– a condition which produces a cone like progressive bulge of the cornea and restricts vison - was always extremely severe in her right eye. At 13, after losing her vision completely in that eye, she underwent her first corneal transplant.
Twenty six years later her vision took another turn for the worse and this year Esther came to Moorfields for a second corneal transplant on the same eye - an operation made possible because of an eye donor.
Recalling how she felt when her vision started to deteriorate Esther said: “It was really tough because I lost so much vision in my right eye. I was trying to function with one eye not working at all and the other eye under a lot of pressure as I have the condition in that eye as well. The blurriness made me feel imprisoned within myself. I began to suffer from acute anxiety as I was trying to get around in my day to day life and getting really tiring and emotional.”
For the last 16 years, Esther has worked in the theatre until her sight started to go. “It deeply affected my ability to work in the way that I had done before. I lost an incredible amount of confidence, light sensitivity got worse and the ghosting of images increased. It became impossible for me to continue working which was really frustrating and saddening for me.”
Describing life after her corneal transplant Esther said: “Since the transplant I’ve slowly got more vision back in my right eye even though it’s only four months down the line. There’s still some light sensitivity but it's not as bad and because of that I’ve felt more confident in getting around places. I am looking forward to the chance of getting a contact lens fitted in the right eye now that it’s a better shape and hopefully will be able to see even more.”
Esther's heartfelt thank you
Esther is only too aware that without the kindness of those who volunteer to be donors she would not have had her sight back and she has though of them often. It is a condition of donation that donors and their families remain anonymous: “I wrote to the Moorfields Lions Eye bank and asked them to pass on my letter of thanks to the donor‘s family to say how sorry I was for their loss, because I’m aware that my gain was at the expense of somebody else passing. I wanted to let them know how grateful I am and to say thank you - it’s such an overused word but I can’t think of a bigger word than that.
“Thank you for giving me this opportunity to take my life in another direction. Everything felt like it had come to a grinding halt. I felt really lost. Trapped in myself. I am aware that this is a real gift."
Moorfields Eye Hospital urgently needs more donors. If you would be interested in finding out more about donation or wish to leave your own special legacy of sight to help people like Esther, please support Moorfields Eye Hospital. For more information on how to become an eye donor or call the Moorfields Lions Eye bank team on 020 7253 1199.
Esther says: “If you could just bear in mind someone like me or anybody else that has benefited from organ donation. It’s such a positive thing to do and you’re giving a gift to somebody to get their life going again. Once you’ve done the brilliant thing of registering, I think you then need to have a conversation with your family. It’s a two part thing, there’s the registration and then the conversation with your family.”
“It was like shop shutters coming down then opening again. I would get bars across my eyes for a couple of minutes and then the bars would lift but week by week my vision was getting more and more blurry. I was getting headaches. I couldn’t see people’s faces unless they were very close to me. Glasses didn’t help. I relied on voice recognition when people knocked at the front door. It was getting very frightening.”
That’s how Londoner Mrs Ayse Hassan described the state of her deteriorating sight in both eyes before she underwent an operation for two corneal grafts.
Mrs Hassan wasn’t new to eye operations she had already had cataract operations three years ago. But when her local optician and the hospital who undertook her original surgery detected a serious problem she was referred to Moorfields Eye Hospital.
The corneal graft operation at Moorfields itself took less than an hour and restored Mrs Hassan’s vision. She arrived at Moorfields City Road at noon for the pre-operative preparation and was discharged at 4pm with her medication - anti-biotic eye drops which she needed to put in on the hour for 16 hours and another set for a treatment every four hours.
Describing her operation she says: “It has made such a difference I am glad I had it done I feel so grateful. I would to say to anyone in a similar don’t be scared, go ahead and have it done. It will make a lot of difference in your life. I was petrified thinking about it but I am so glad I did it.”
Moorfields undertakes more than a thousand corneal transplants a year, none of which would be possible without the kindness and generosity of those who agree to be eye donors.Without suitable corneas; patients have to face having their operations cancelled.
Mr Bruce Allan, a consultant in the refractive and corneal service at Moorfields explains why the donation service is so vital: “Without this tissue, we would have to buy the corneas from abroad or from the NHS Blood and Tissue bank which is also facing shortages. Buying issue is expensive for the NHS, and we cannot use any of that tissue for research purposes which helps Moorfields to develop pioneering treatments for ocular surface disease. Much of our corneal surgery and our research are dependent on the kindness of those who volunteer to donate their tissue to the Moorfields Lions Eye Bank after their deaths.”