When he was 16 years old, a doctor told him he would go blind in two weeks. His diagnosis was a condition called keratoconus, which had eaten up his corneas. The only way to save Harun Mwangi’s sight was to get an urgent cornea transplant.
“There is a shortage of corneas in Kenya, and the queue of those needing the procedure is too long. There was no hope,” says his father Lawrence Ndung’u. What followed were long depressing days.
For Harun, the prognosis made six years ago meant a dark future. He had gone through school battling shortsightedness and itchy eyes. On the waiting list were about 90 people ahead of him. “My dream of becoming a photographer and graphic designer was crashing,” he says.
The family resorted to seeking medical treatment in India. “We had a fund raising to get the Sh700,000 needed for the procedure. It was not easy,” says Lawrence.
Dr Jyotee Trivedy, head of medical services and ophthalmologist at Lions SightFirst Eye Hospital in Nairobi says even though they have a cornea storage bank that was set up in 2010, most Kenyans are not open to the idea of donating organs when they die.
She attributes this to cultural and religious beliefs as major hindrances to cornea donation. “The hospital normally receives about 10 eyes donated by Kenyans of Asian origin. The balance is imported from the US,” she says. She says they import at approximately Sh300,000 per tissue, making the procedure very expensive.
Corneas, unlike other organs, can only be harvested when the donor dies. The legal framework around organ donation in Kenya is also shaky. The law indicates that one can state either in written or oral form to be a donor upon death, provided there are two witnesses. However, it gives the dead person’s relatives leeway to object the harvesting.
But the Health Bill 2016 recently passed by Parliament seeks to tighten the rules such that once a donor commits, relatives cannot revoke the directive. Harun considers himself lucky. Even though it was a crazy rush against time; he got back his vision back, thanks to a donor in India. “I wish things were easier in Kenya. You only realise how important organ donation is when your life is at risk,” he says.
Christabella Mueni, a Form Two student suffering from keratoconus says she is hopeful that with the new laws, more people will donate. Statistics indicate there are 300,000 blind people in Kenya, 19 per cent is due to keratoconus.
Dr Kahiki Kimani, an ophthalmologist at Eagle Eye Laser centre in Nairobi says there is a rise in keratoconus cases especially among the youth.
She says this could be due to availability of sophisticated equipment that can give quicker and better diagnosis at initial stages. “If keratoconus is caught early, it can be treated without a transplant,” she says.