• All was going on well save for a persistent eye problem that she had learnt to live with from childhood.
• When playing ‘kati’ with other children, I never used to see the ball. I would feel like I was being clumsy and quit playing,” Chela said.
October 19, 2015, will forever remain ingrained in Nancy Chelang’at’s mind.
As a bubbly 22-year-old campus student then pursuing a mathematical course, the future looked bright for Chela, as she is popularly referred to.
All was going on well save for a persistent eye problem that she had learned to live with from childhood.
“Since I was a child I used to have night blindness. Whenever I dropped something on the floor, I had difficulties getting it," she said.
"I would bump into people, waddle into pools of water and when playing ‘kati’ with other children, I never used to see the ball. I would feel like I was being clumsy and quit playing,” Chela said.
Her parents were aware of the challenge and took her for many eye check-ups but she often ended up being misdiagnosed. It was only after seeing an ophthalmologist in 2015 that a proper diagnosis was made.
It was discovered that she was suffering from an irreversible eye condition called retinitis pigmentosa which affects the retina.
“The doctor told me I would have to make some adjustments in my day-to-day life as the condition had caused severe damage to my eyes and could only be managed," Chela said.
The disease had also caused inflammation in her eyes due to the accumulation of fluid.
Confused and in denial, she dropped out of campus to process the shocking news. It was while on that break that she decided to change courses and pursue a Communication course.
By this time, her eyesight had deteriorated so badly that she could hardly recognise even people she knew.
However, Chela refused to wallow in self-pity and convinced herself that her condition wasn’t so bad.
“I was in denial for a very long time. I bought a white cane but refused to use it. I would bump into people while walking on the streets but kept wondering what was wrong with them," she said amid laughter.
"It’s only after I was hit so hard by a mkokoteni guy (hand cart) that I came to terms with the fact that I could not continue living a lie,” she said.
Four years after the diagnosis and having had enough of falling into ditches, Chela went for therapy and learned how to thrive in her new normal.
She has since graduated with a Degree in Communications and is currently pursuing her Masters.
She is glad that she has found a way to thrive in this new normal but wishes an early diagnosis had been done to save her sight.
The sworn warrior now uses her story to raise awareness about the eye condition.
Ophthalmologist Oscar Onyango said Retinitis Pigmentos is a condition where the photoreceptors - the cells in the retina responsible for seeing - start to lose their function.
“One can inherit it from parents or can also be the first one in the family to suffer from the condition in what is known as sporadic mutation,” he explained.
The condition often presents with night blindness, light sensitivity and pain upon exposure to light. There can also be an accumulation of fluid in the eye (aqueous humor) that causes the eye to swell.
Retinitis pigmentosa is diagnosed via different scans to identify the cause. Causes mainly range from scarring that causes thinning of the retina, accumulation of fluid in the eye or DNA mutation that’s linked to a defective gene in the patient’s family.
“In the case of DNA mutation analysis, we have collaborated with a centre in Japan where we assess over 350 genes to see which one of them could be responsible the condition,” Dr Onyango said.
He further said research is ongoing globally to determine if some of the fluid in the eye (aqueous humor) could be containing toxic material from dead cells and if that could be affecting healthy cells.
“When cells at the back of the eye die they produce a lot of debris (superoxides) which predispose other healthy cells to dying. So we want to assess how much toxic material could be in the eye when one has retinitis pigmentosa and the effect of the anti-inflammatory medication being used in improving the condition,” the doctor said.
Since the condition, if irreversible, Dr Onyango advises patients to seek early intervention whenever they experience a problem with their eyes.
He advised that should someone experience the signs stated above, they should take Vitamin A, C and E supplements to boost the normal functioning of the cells.
Low vision aids can also be of help. Retinitis pigmentosa awareness month is observed annually in February and is the most common hereditary eye condition worldwide.