Keratoconus is an unfamiliar word to many Kenyans, but chances are that we have seen its effects, or are unable to see because of its effects, as ANNE ANJAO, whose two children were victims, narrates.

I’ve been waiting for my son, Leon, to come out of the operating room since 6pm. It is now 9.45pm, and five other patients have gone in and come out, and I’m starting to worry. Finally, at 10pm, my brave young man emerges from surgery. His eyes are red and the surgical contact lenses are uncomfortable, but his sight has been saved.

Leon, like his sister, had keratoconus, a rarely mentioned but serious eye condition.

The Laser Eye Centre in Nairobi explains the problem thus: A normal cornea is shaped like a watch glass, but sometimes it starts thinning and bulging, causing blurred vision. Over time, the cornea’s shape changes from a smooth curve into a cone-like shape. The normally clear cornea will then turn cloudy, further impairing vision. This is known as hydrops, also known as keratoconus (KC) (kerato meaning cornea, and conus like a cone). Due to this distortion, the cornea cannot perform its main function of focusing light rays entering the eye onto the retina, leading to vision problems, and even blindness.

The exact cause of KC is not known, but it is believed that it could be due to a malfunction in the enzymes, which makes the stroma (the supportive framework of an organ, usually composed of connective tissue) weak. It could also be associated with allergy and there is some evidence that it may be hereditary.

KC is also linked to over -exposure to sunlight, improper contact lens fitting and constant eye rubbing.

During the four hours I sit at the clinic, my mind drifts off to where it all began…

The year is 2006. My daughter, Claire, then 17 years old, starts experiencing loss of sight. Like most other parents, I take her to an optician and she is fitted with glasses. When we pick the spectacles, she promptly declares she can see and life goes on, until two months later when she says she can no longer see.

Of course, we castigate the optician for not having done a good job, and promptly consult a different one. More powerful lenses are prescribed and we resume normalcy.

TRANSPLANT

Yes, two months later, we are back, and on and on it goes, until we attend a church conference and Claire goes to the loo. A friend grabs her just before she goes into the gents’. On coming back to the conference room, she cannot trace us, even though we are sitting right next to the aisle.

That is when it hits us: This is serious. We now seek an ophthalmologist. The diagnosis is keratoconus.

The doctors say Claire must undergo a transplant, at a cost of Sh2 million. We seek a second opinion. Same diagnosis. We seek a third opinion. Same diagnosis, only that this doctor thinks that since the goal is to see, why not use contact lenses? They cost Sh30,000.

Because we do not have Sh2 million, we naturally go for this option. What’s more, the girl can see very well and apart from the setbacks like falling lenses and dust, all is well. Or so we think.

WITCHCRAFT

In June 2013, the contact lenses just will not sit on the eye. Claire’s eyes are constantly itchy and she keeps scratching them — something the doctor has said she must never do. Things get so bad that she is unable to work. Her boss advises her to see her doctor.

Well, we have heard of Dr Mukesh Joshi and have been toying with the idea of seeing him. Since she works in Westlands, she takes a walk to his clinic, and Dr Joshi is categorical that time for a graft has come. He will start with the left eye, which is particularly badly off.

So, July 25, finds me sitting, and praying in Dr Joshi’s clinic as the transplant is done. I pray for healing fervently, especially because my son, Leon, has the same symptoms his sister had.

I have been given all manner of advice. Some people think I am bewitched and should ‘undo it’, while others propose a trip to India, where treatment is cheaper. Other friends are silent, perhaps wondering what to tell me. But many are so supportive, with generous cash contributions, prayers and moral support. I need Sh1.4 million for Leon and Claire’s treatments, and a caring Kenyan and Rwandan community sees me through, with the help of God.

Claire emerges from the operating theatre with a patch and a shield on her eye. Now the six-month wait for clear vision begins. Before that, there are daily visits to the clinic to have the patch changed.

BLURRED

On day one, she is in a lot of pain. The doctor prescribes stronger medication. On day two, the complaint is the ‘burning’ light. After three days, the patch is removed and she can see, although everything looks blurred. Thankfully, things are literally looking brighter with each passing day.

I am glad Leon was diagnosed in December, last year, and has undergone cross-linking, which strengthens the cornea, so he will not have to undergo grafting.

The many doctors we saw earlier did not give the option of cross-linking, yet it was already in the market in 2006. I cannot help thinking how much trouble Claire would have been saved if we had known of this treatment.

But when all is said and done, so far, so good. However, I would not want another parent to wear my shoes. If your child shows the symptoms of keratoconus, please consult an ophthalmologist soonest possible; do not take chances.