Meet 24-year-old one of few Kenyans in the country who have undergone surgery to replace their damaged corneas with a graft harvested from a dead person.

24-year-old Olivia Moraa who is one of few Kenyans in the country who have undergone surgery to replace their damaged corneas with a graft harvested from a dead person.

“I tell people that I have had both my corneas replaced with a dead Indian’s and dead German’s, but they don’t believe me,” says Olivia Moraa.

This 24-year-old is one of few Kenyans in the country who have undergone surgery to replace their damaged corneas with a graft harvested from a dead person.

Before this surgery, Olivia was living with keratoconus, an eye disease that turned her cornea from round to cone-shaped and made everything look like she was looking through a glass smeared with petroleum jelly. All she could pick out were colours and shapes.

Before it was correctly diagnosed, Olivia was being treated for poor eyesight from the age of seven.

“I wore glasses to correct my eyesight. But it only got worse. The power of my glasses was increased after each visit to the optician, making the glasses thicker with every visit,” Olivia says.

By the time she was 16, Olivia’s eyesight had deteriorated so much that she could not see, no matter how close objects were to her face.

 “The eye doctor diagnosed me with acute keratoconus. My cornea was so cone-shaped that I could not wear the prescribed lenses. Sometimes, I’d blink, and they’d get caught in my eyelids and fall out of my eyes,” says Olivia. Her eyes were also itchy, red and inflammed. The only solution, according to her doctor at the time, was to have her have a cornea transplant or risk blindness in three months.

DARK PERIOD

“The thought that I would never see again scared me. It wasn’t fair that I would lose my eyesight at 16. You don’t realise how precious a body part is until you are about to lose it. You can replace a lost tooth or a broken arm, but with the eyes, once you go blind, there is no going back,” says Olivia in a small voice.

She pauses to reflect on the agonising weeks she spent at home, almost-blind, after being pulled out of school that June.

“I became withdrawn, reserved and angry, churning the thoughts of going blind over and over in my mind.”

That August 2007, Olivia’s mother took a bank loan, and hopped on a plane to India with Olivia and her younger brother in tow, to have the surgery done there. The family spent four weeks in India, two of them waiting for a cornea to be available. When one was found from a recently-deceased Indian in Olivia’s age bracket, a three-hour surgery to transplant it in her left eye was done. After the surgery she was monitored for two weeks before she was given the green light to return home.

 “I was indoors for four months nursing my right eye. The doctor told me to wash my face with cold water whenever I felt like rubbing my eyes.”

Rubbing the eyes is discouraged because you can break a suture, causing an infection that could ultimately lead to the graft being rejected.

“The next year, after seven months out of school, I resumed classes, but could only manage half-day learning at a day school near my doctor’s office to avoid straining my eyes. I also wore very dark glasses throughout,” Olivia recalls.

During this time, Olivia relied on her right eye to see. With a cornea transplant, only one eye can be operated on at a time. That eye is given at least three years to heal before the operation on the second eye can be done. In those three years, the 11 sutures in the operated eye are removed and the possibility of organ rejection is considered.

Olivia sat her high school finals that November and aced the exam; and her eye, thankfully, neither got infected nor was the graft rejected. Her doctor cleared her for the second cornea transplant on her right eye after three years. The second time around the cornea transplant was done here in Kenya because unlike at the time of the first surgery, cornea transplants were now being done in the country. The cornea graft was imported from Germany, though.

It was all knotty-stomach and sweaty-palms as Olivia waited for the day of the surgery in April 2011: “I wanted the surgery over and done with …  It went well and this eye healed much faster than the left eye,” she says pointing to her right eye.

In less than four months, Olivia had returned to the normalcy of her routines with near-perfect vision in both eyes. She works as a media assistant with a passion for telling stories through documentaries and short films.

I FOR AN EYE

“The transplants made me a happier person ... I don’t think anyone understands what it’s like coming from seeing like this...”Olivia brings her notebook up to the tip of her nose, “... to seeing like this,” she stretches out her hand to demonstrate.

“I almost lost my sight. Now everyday it seems like a miracle that I can. I thank God for giving my (single) mum the ability to pay for the surgery and I am glad I don’t have to wear those uncomfortable lenses anymore.”

It was in this mood of gratitude that Olivia and her doctor co-founded the Keratoconus Foundation of Kenya together with 23-year-old Radvan Kibet Vitalis, in June 2011. Olivia started it to advocate for Kenyans to pledge their corneas to be donated to keratoconus patients.

Radvan himself has been living with the condition since he was 13. He manages it with contact lenses on and off.

“I am unable to get a cornea transplant because I can’t afford the surgery, but you could say I am saving myself to have my transplant using a cornea donated by a Kenyan,” he chuckles.

Before starting the foundation, Radvan was a freshman at the school of medicine, but he was kicked out of college on the grounds of incapacitation.

“Now I spend my days as a drumbeater for Kenyans who suffer from keratoconus,” Radvan says.

“The foundation offers emotional support for those who are treating the condition, as well as financial support by seeking funds from well-wishers, and sponsoring beneficiaries who need the transplant but are financially constrained. It is also a resource centre for people who want more information about the condition.”

To date, over 50 keratoconous patients are in a treatment programme or have had a cornea transplant sponsored by the foundation.

One such patient is 16-year-old Christine*, a form two student in a boarding school in Embu. The condition started as blurred vision when she was 14, a few weeks before she sat her final primary school exams.

Her mother, 36-year-old Rachel Wambui, didn’t pay much attention to it up until Christine woke up one day in mid-2012, and could not see at all. Christine was diagnosed with keratoconus. The eye specialist fitted her with a special pair of hard contact lenses to provide better vision, but unfortunately this particular pair was broken, so the lenses worsened the condition and killed her spirit.

“Every morning I woke up, the thought that I would have to wear the lenses made me want to give up,” says Christine. “It was painful when they touched my eyes and I itched a lot too. Sometimes, the lenses stuck to my eyes and I couldn’t remove them before I slept. Or they’d fall out of my eyes … ,” her voice cracks.

GIFT OF SIGHT

Luckily, Rachel, Christine’s mother, stumbled upon the foundation late last year, and through it, Christine was started on an affordable treatment programme called cross-link, which slows the progress of the condition.

Last August, Radvan started a campaign dubbed ‘I for an Eye’. The goal of the campaign is to get people to donate their corneas – or rather, to allow their corneas to be harvested after their death for transplant into a keratoconous patient.

But what does the law say about organ donation? The Human Tissues Act allows for harvesting of organs from a dead person for scientific research or medical treatment. Such a donor must have pledged to donate his organs prior to his death. However, the act gives the dead person’s relatives a right to object to this harvesting. This is similar to what the draft Health Bill 2014 says.

Radvan points out what it means to donate your cornea to a keratoconus patient, “It is passing on the gift of sight to somebody else. Someone gets to see the world through your eyes for the rest of his life – what more could a person ask for?”

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Q&A with Dr Donato Cordi, an opthalmologist who founded the Rural Eye Screening Health Centre

What is keratoconus?

Keratoconus is a degenerative eye condition that arises from a weakening of eye collagen, causing the cornea to become cone-shaped instead of its usual dome shape.

How does the condition progress?

The condition can be detected as early as five years old. If not treated, by the time the patient is between the age of 14 to 17, the cornea bulges out. It is rare for keratoconus to manifest later in life.

How can it be controlled, managed?

For the younger patients below the age of 12, glasses can be used to correct the astigmatic cornea. The glasses can be done away with if full vision is achieved in both eyes. For teens - if it is caught early and depending on the thinning of the cornea – there is a special treatment called cross-linking.  Should the cross-link treatment not be successful, then a cornea transplant is recommended. 

Which eye symptoms should parents, and everyone in general, not ignore?

Be concerned if your child rubs his eyes continuously, or if there is a red and bumpy ring surrounding the cornea. You should also not ignore inflammed eyes.