George Obiero has defied all odds to become the longest-living patient suffering from sickle cell anaemia in Nyanza region. Born in 1961 in the little-known Ngiya village, Obiero was oblivious of what was in store for his health until he was diagnosed with sickle cell anaemia two years later.
This is a blood disorder that is normally inherited from parents who are either genetic carriers of the condition or are already suffering from the disease.
Being the firstborn, Obiero was supposed to be the source of joy to his parents. But due to his continuous illness, he certainly became a burden.
“Those who witnessed my illness while I was an infant told me I subjected my parents to financial and psychological torture,” Obiero told the Star.
For two years, the parents and doctors could not understand what was wrong with his health, until Siaya doctors referred him to Kenyatta Hospital in the early 70s. It was there that it was discovered he was suffering from sickle cell anaemia after a series of pediatric hematology clinic.
Obiero’s parents lost hope for any bright future for him due to myths and misconceptions about sickle cell disease that no one can survive beyond 20 years. The doctors recommended that he take folic acid every day to grow like any other child his age.
Even with the intervention, he was still ever sick, so much so that the year he was supposed to sit his CPE exam, he missed it as he was admitted at Kenyatta Hospital.
Obiero was forced to stay out of school for two years. After his father retired, Obiero went back to his rural home and was enrolled in class seven at Agoro Yombe Primary School, where he was the best pupil that year.
“I was called to St Mary’s Yala High School, and my parents were very happy just like the wish of every parent to see their children succeed. But at Yala, I was ever sick until I again dropped out in form two for lack of fees,” he said.
Obiero said his treatment had consumed every penny in his father’s account, and he could no longer afford the school fees. His father lost hope about his chances of survival and further education.
TURNING POINT
But just like any ambitious young man, Obiero did not give up. After two years at home and now fully recovered, he approached his ACK bishop for help.
“I was able to reach the late Bishop Okundu, who paid my school fees from form two to form six. I finished in 1986, after which I joined Kilimbogo Teachers’ College,” Obiero said.
He is now a primary school teacher who is married with two children, and none of them has been diagnosed with sickle cell anaemia.
Obiero said sickle cell is prevalent in major towns near water bodies, such as Busia, Kisumu, Siaya, Homa Bay and Migori. He said those living near Lake Victoria are really suffering, and the government must educate residents to arrest the illness at early stages.
“In Siaya, I have formed an awareness organisation called Siaya Sickle Cell Foundation, to educate parents about the disease,” he said.
“We urge parents to go for screening, and those who are sick, we register them for treatment. We work with partners like Kemri to help the kids grow like others.”
Statistics show the county loses five to 10 children to sickle cell anaemia every month, a figure he says might increase if the government does not wage war on the illness.
Obiero said 80 per cent of those suffering from sickle cell do not seek medical attention due to lack of awareness. “In Siaya, out of four children, one child is sicklier, and as long as our mothers and sisters continue to give birth, the number is likely to rise,” he said.
TREATMENT WOES
The main problem for people suffering from sickle cell is drug shortage and lack of blood in most health facilities. Obiero, who is also the chairman of Siaya Xickle Cell Foundation, said in many cases, patients of sickle cell find it hard to get the medicine they need on daily basis due to their exorbitant prices. He urged the state to provide the drugs in government health facilities.
The chairman asked the Health ministry to put up special wards in health facilities specifically for the sickle cell disease. He said if patients suffering from the blood disorder disease are put in the same wards as other patients, they are not likely to receive the care they deserve, putting their lives at risk.
Obiero said there is a lot of stigma against people with sickle cell anaemia due to ignorance. He said the disease should be added to the list of disability groups, just like albinism, so patients can also benefit from government funds for treatment.
Charles Juma, the Siaya chairman of people living with disability, welcomed the move, saying the suggestion is long overdue. He said in a country like the US, chronic diseases fall under the group of people living with disability.
“Our constitution is only clear on physical disability and mental disability. Other disabilities are not clearly spelled out,” Juma said.
He called for the definition to be expanded, saying sickle cell patients will only need to register and comply with law for government funds.
CALL FOR SCREENING
Siaya county deputy director Bob Awino said health screening for sickle cell diseases among couple before marriage can help eliminate the illness among newborns.
He said chances of infants developing sickle cell disease if one parent is negative are lower, as compared to when both parents have the cells, which are inherited genetically.
Awino said once a couple knows their sickle cell status, they are in a better position to decide if they can have children or not.
The health practitioner said in a national baseline survey conducted in the country in March 2015, more than 100,000 children under five were tested for sickle cell anaemia. The report showed the high burden of the disease is along water body counties.
Siaya governor’s wife Rosella Rasanga said the disease has been a major public health problem, contributing to high mortality rates of children under five. She said over the years, sickle cell disease has been neglected, but she will be advocating for free treatment in Siaya county.
“Time has come for counties suffering from the epidemic to break the silence and prioritise ways of curbing the disease,” Rosella said.