British people are being urged to donate their corneas to help others with eye disease regain their sight

At 14, Erika Kelly was diagnosed with lattice corneal dystrophy, a rare condition that causes her vision to gradually decline. “If you think of corneas as windows to your eyes, my windows get dirty very, very slowly,” she says. “Your eyes dry out constantly, so just from blinking or opening your eyes, your corneas can tear. The more diseased the cornea gets, the harder it is to see.”

Now 26, Kelly, from the Isle of Man, has had two NHS cornea transplants to give her “a clean window”.

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In the UK, 3,500 people’s sight was restored through a transplant in the year to November 2018, according to NHS Blood and Transplant (NHSBT). Despite the high success rate, – on average 72% at five years, rising to between 85% and 90% for conditions like keratoconus, where the shape of the cornea becomes distorted – Kelly and the other members of her family who also live with the hereditary and incurable condition, will need transplants every five to 10 years to avoid losing their sight completely.

But there is a shortage of donors. Unlike organ transplants, the recipient and corneal donor don’t need to be a perfect match for the surgery to be successful. They don’t even need to have the same blood type. And even though one donor can help restore or improve the sight of up to 10 people, eyes are “the one tissue that people seem to have a reluctance to donate,”, says Helen Gillan, tissue manager of NHSBT. At the end of March 2018, 85% of registered donors indicated a willingness to donate all organs and tissue. Yet, of those donors who had indicated which organs and tissue they did not wish to donate, 75% said corneas.

“We’ve called it ‘the yuck factor’,” says Gillan. “Because [the eyes are] on the outside of the body I think people are a bit more attached to them.”

As part of a cornea donation, the whole eye is removed from the donor and transported to one of two eye banks in Manchester and Bristol. The cornea is then removed from the eye and can be stored in a solution that protects the cells for 28 days. Other parts of the eye – such as the sclera (the white part) and the limbal stem cells – can be used in research, into treatments for other eye conditions, for example.

Facebook Twitter Pinterest A cornea that has been removed from a donor for surgery. Photograph: Media for Medical SARL/Alamy Stock Photo

The removal process can cause many people to worry about the appearance of the donor afterwards, but “we go to great lengths to make that right”, says Gillan, adding that NHSBT spends more time training its retrieval teams on making an accurate prosthesis of the eye, than it does on the retrieval itself; one eye will be retrieved and a prosthesis modelled from it before the second eye is removed so that patients look as much as possible as they did.

At the time of writing, England’s two eye banks hold just 280 of the 350 corneas the NHSBT estimates it needs to meet demand. Any shortage is often filled by Europe and the United States.

The Royal Liverpool hospital regularly imports corneas from eye banks in Italy, says Stephen Kaye, the hospital’s clinical lead for corneal transplants. “We do 180 to 200 transplants a year, and 80 or so donor corneas come from outside the UK,” he says. He hopes the introduction of a new opt-out system for organ donation – expected by next spring – will see more donors from within the UK.

In the event of a no-deal Brexit, hospitals will need a licence from the Human Tissue Authority (HTA) to import corneas from the EU. Some will already have this if they import from countries outside the EU and will simply need to apply for a free licence variation. Those that don’t, such as the Royal Liverpool hospital, will need a new licence, costing around £10,000. The option then, says Kaye, would be for the hospital to request that corneas are imported into one of the two NHSBT eye banks, and then issued to the hospital.

And while the HTA can’t issue any licences for imports from the EU while the UK is still a member, a six-month transition period will give hospitals time to meet the new licensing requirements, should the UK leave without a deal.

In the meantime, Gillan has the unique challenge of making sure there are enough corneas for all the transplants scheduled up to June.

“With that [28-day] shelf life we know that 350 corneas is enough, as long as the donation rate is consistent, to actually provide us with sufficient corneas [for transplant],” says Gillan.

But the donation rate does fluctuate, making it difficult to plan. “What we need is people - if they’ve made a choice on the organ donor register to not donate their corneas- to change their entry,” she says. “It’s important to understand that we won’t just ask [a family for consent] for the sake of it. If we’re asking, it’s because we need corneas,” she says.

For Kelly, it is a simple choice: “It sounds awful, but at the end of the day, you’re dead ... and you don’t need your eyes any more.”

She is studying for a degree in psychology and counselling, and is an endurance race walking athlete competing for Great Britain at the 2019 European Race Walking Cup with her sights set on the 2020 Tokyo Olympics.

She says: “If I hadn’t had that surgery, I would be so much less independent. I might not be doing sport, I might not be studying.”

“And you’re not just helping one person,” she adds. “If my mum hadn’t had transplants she wouldn’t have been able to have a job [as an educational support officer] to cook, to drive … It has implications for more than just the person receiving the transplant.”

To sign up to the organ and tissue donor register, or to change your existing preferences, go to: www.organdonation.nhs.uk