Living with Keratoconus – Nkosi and David talk about rare eye disorder

by David Hinkson

World Keratoconus Day is celebrated on November 10, and this year’s celebrations are aimed at raising public awareness of this optical disorder.

Keratoconus is a condition in which the cornea of the eye forms a conical shape, thus distorting vision, and can lead to blindness if not properly treated or controlled in its early stages.

Roseann Myers, a well-known figure in the tourism industry and herself a keratoconus patient, founded Keratoconus Barbados two years ago to educate Barbadians on the condition, as well as to assist patients in getting the necessary treatment after diagnosis.

In this article, two patients, Nkosi Herbert and David Alleyne, share their experiences with keratoconus and how Keratoconus Barbados has helped them.

Nineteen-year-old Nkosi Herbert was first diagnosed with keratoconus in March 2019 while he was at the Christ Church Foundation School. Most patients say they first become aware of the condition when they
are in their teens.

In Nkosi’s case, “My vision through my left eye was very blurry and I could not see far or medium distanced objects very well.”

Nkosi said he found out about Keratoconus Barbados through local ophthalmologist, Dr Nigel Barker, and his mother, Colleen Herbert, and joined the organisation.

In order to treat the condition, Nkosi had cross-linking surgery done, a procedure in which doctors use eyedrop medication and ultraviolet light from a special machine to make the tissues in the cornea stronger. It is called ‘cross-linking’ because it adds bonds between the collagen fibres in the eye which work like support beams to help the cornea remain stable.

Web MD states cross-linking takes an average of 60 to 90 minutes to complete, and it is most effective shortly after the condition is first diagnosed.

The ultimate aim of the treatment is to slow down the progression of keratoconus and prevent future vision problems.

Nkosi stated, “Dr Barker recommended that I get the cross-linking procedure done to stop my vision from distorting too quickly. My parents, Colleen and Lawrence Herbert, as well as my school, set up fund-raising efforts and I also received some assistance from several individuals, organisations and business houses. KC Barbados had also done some presentations to school teachers about the condition, so my principal, Robert Cumberbatch, was aware of my condition and he was very supportive.

“I had the procedure done on one eye in July, and the second was done in August, two weeks after the initial operation. Since the surgery, my vision has not become any worse, but the eye is still the same. Essentially, it has halted my vision from deteriorating further.”

Nkosi is presently a second year Sports Science student at the UWI Cave Hill Campus and said his new scleral lenses (contact lenses which cover the sclerotic coat of the eyes rather than just the lens) “have improved my vision significantly in terms of both reading and seeing objects that are far away.”

He said the new lenses have also helped him play volleyball, a sport he loves, more effectively.

“Before using the scleral lenses I could not see the ball very well, but now I can play much better and more comfortably.

In fact, did you know that Stephen Curry, one of the leading players in the NBA, has keratoconus and he wears scleral lenses when he is playing? One of the good things about these lenses is that they do not fall out when you are active.”

He noted that his sister was diagnosed with keratoconus as well, and he advised fellow students diagnosed with the condition to “Stay hopeful and get the surgery done, and after that, the scleral lenses will be very helpful as well. I would also advise parents to let children get their keratoconus treatments as early as possible so its progress can be halted before their vision gets any worse.”

Meanwhile, 62-year-old David Alleyne, who now also benefits from the scleral lenses, said he wished they were around when he was first diagnosed with keratoconus.

“I first discovered I had keratoconus in the early 1980s; I cannot say I was experiencing any discomfort, I just knew that my vision wasn’t very good. I had been wearing glasses since I was nine years old, but I only learned about keratoconus when the ophthalmologist explained it to me at that time. The doctor told me my eyesight was getting worse and I would have to start wearing contact lenses, and my left eye was worse than the right one.”

“Now, at that time, I used to play First Division cricket, and my optician was amazed that I could actually see the ball, and perhaps I would have done better in cricket if it were not for my eye problems.

“However, when I started using the contact lenses, I found that the right one fitted better because the curvature on the left lens was a lot worse and it was very uncomfortable.”

He described how difficult it had become for him when he was using traditional contact lenses.

“I found that the lens would rub against my eyelid, dust would get into it, and on many occasions when I was on the field the lens would actually fall out of my eye. I was constantly losing lenses during matches. Therefore I had to keep spare lenses on me all the time and this became very costly. It would also hurt if the lenses got dry.”

David said the scleral lenses have changed his life significantly. “I changed my contact lenses about a year ago, and I moved from the normal corneal contacts to the scleral ones. I got them from a specialist who works in Dr Barker’s office.

“These lenses, as mentioned before, cover the white part of the eye and as a result the entire cornea, but they also contain a saline solution which helps alleviate any dryness. I also find that they are less sensitive to light and since they are wider than the average contact lens, you don’t get any dust seeping into them either and I would say my vision is better since I started using them. I think it would have been heaven on earth for me if these were around years ago!”

As a member of KC Barbados, David assists the organisation financially and helps it to build awareness of the condition among the Barbadian public. To his knowledge, no one else in his family has keratoconus and unlike other conditions it does not come about owing to lifestyle practices, diet and the like.

He admitted, “My vision still is not the best, but it is serviceable, and I can see clearly to go about my daily activities. I think anyone who may be experiencing dry eyes or has already been diagnosed with keratoconus should consider getting scleral lenses; yes, they may be more expensive, but they are very beneficial and this organisation’s work is important in educating people about the condition and how best they can handle it.” (DH)