Condition that robbed Julius of his eyesight

“I love poetry. Although it’s been a while since I last wrote a poem, I write about what’s happening in our environment.

In 2020, I penned a poem titled “Darkness.” It wasn't a composition of rhythmic verses or rhyming words. Instead, it was a raw outpouring of my inner struggles, frustrations and disappointments, interwoven with a thread of hope. It was dark; I have not read it since.

This happened a few months after losing my vision—I am blind. However, without my white cane, you might never guess my condition. I lead mostly an independent life, capable of doing many things, including reviewing cars through touch and feel.

I am the firstborn in a family of two and my childhood was fairly typical until the age of nine. It all began with my squinting eyes, a minor concern at first. But as my vision deteriorated, I felt a need to adapt. I moved from the back seat to the front of the class so I could see the blackboard. Still, my academic performance deteriorated, leading to a meeting with my concerned mother at the school. The teachers suggested to her that we seek medical attention.

Our journey for answers led us to ophthalmologists, who focused on the outer parts of my eyes. Little did we know that the key to my diagnosis lay at the back of the retina. Initial examinations showed that my eyes were just fine, leaving my mother desperate for answers.

When I was a baby, I suffered from cerebral malaria, a severe complication of malaria. When my mother mentioned this to a particular healthcare practitioner, he determined that the disease had become aggressive and that what I had was a mental illness. I was enrolled in a special needs school in Nairobi. On the first day of school, I was made both the school captain and head of sports. From the first interactions with the teachers there, they doubted my supposed mental condition and recommended further examinations. Within a week, I had lost my sight completely.

At barely 10, I remember being frustrated with everything that was happening, but my greatest worry was that I would never be able to drive cars because I had an immense love for cars and spent most of my free time drawing them. It was then that I was diagnosed with maculopathy, which affects the macula, the central part of the retina in the eye responsible for central vision and fine detail.

There’s a twist. A year later, my vision began to return and I could perceive colour or people around me, albeit with difficulties. This went on for a few years until I started losing it again and I had to make use of braille. During school holidays, we would chase whatever opportunity we heard of for possible treatment. Then I got fed up and told my mother that we needed to stop. I would tell her, let's stop here. “I am okay.”

 From there, it is like something shifted inside of me. I started to actively take part in co-curricular activities at Thika School of the blind and when it came time to join the university, I got an epiphany to pursue law so that I change policies and legislation from the ground up.

In 2014, I went for an extensive review of my condition and learned that besides maculopathy, I had another underlying degenerative condition that attacks the retina — retinitis pigmentosa.

The probability of losing my sight was higher than regaining it, the doctor told us. When I got to campus, I practised independence by navigating the streets of Nairobi blindfolded to stimulate my mind and develop crucial skills.

In 2019, I completed my law degree and embarked on the path to becoming a lawyer by attending the Kenya School of Law . Just before my bar exam, I lost normal vision again. Although it happened very fast, migraines and passing out were ominous signs. I knew that I was going blind again. I volunteered for rehabilitation and used to teach others at the Kenya Society for the Blind how to adapt to the new normal.

With time, I developed a unique way to differentiate cars by listening to their engines, feeling their body structures and understanding the distinct features of various models. I no longer perceive my situation as a problem; I've reached a place of acceptance.

Since the last time I wrote a dark poem, I've penned others, including "Renegade" and "The Blind Universe." These pieces reflect the strength and hope within me. While I practise law, my focus is on advocacy and policy change. I work at inABLE , a non-profit organisation that empowers persons with disabilities through technology. My legal work revolves around contracts and MOUs.”

Catherine Kareko, consultant ophthalmologist and retina specialist

Maculopathy is any pathology that affects the macula, the central part of the retina, and its responsible for our central and colour vision.

There are many causes of maculopathy, but the most common causes are age-related macular degeneration and diabetic macular edema.

Other causes include myopic (short-sightedness) maculopathy or side effect of some drugs such as hydroxychloroquine. Also, it can be caused by epiretinal membranes—sheet of scar tissue that grows over the retina and causes distortion of the normal anatomy of the retina or solar maculopathy that’s caused by sun gazing or viewing of an eclipse.

The symptoms include decrease in vision, shadow/ blind spot in the central visual field, distorted vision(metamorphopsia),and poor colour vision.

The treatment is dependent on the cause and it involves slowing down disease progression and vision loss as maculopathy cannot be cured. For instance, for age related macular degeneration and diabetic macula edema, we use drugs that are delivered into the eye through injections to stop leakage of blood vessels.. Surgery is indicated in some cases such as with epiretinal [email protected]