By Esther Nakkazi
After Evelyn and her boyfriend had dated for four years they decided to get married. They were young and so in love. The only medical check-up they bothered to take was HIV as was advised by friends and family.
Soon she was pregnant with a baby boy and another one came a year later. Evelyn’s hope was to have two and maybe another set of children later after securing a place in her career as a lawyer.
Henry the second child was sickly and not as strong as his big brother. They blamed it on the diet, the maid, low appetite, everything, whatever. The frequent visits to the hospitals and long nights of the child crying with unexplained pain sent the young parents panicking.
After many misdiagnoses by various physicians, one of them casually suggested a sickle cell disease test. The confirmatory test turned the young family into misery and eventually the husband left to remarry someone ‘normal’ which still leaves tears in Evelyn’s eyes.
Something else still hurts so bad. While seeking treatment for her little boy she was shocked when a doctor said to her “for those who succumb…it is nature’s way of cleansing the human race.” It meant her child would die anyway and it's then that she got determined to fight for him.
About 12,000 to 16,000 children below five years die of sickle cell disease annually in Uganda. Sickle cell disease has been declared a major public health problem for sub-Saharan Africa by the World Health Organization. However, its funding remains very low.
According to Evelyn, ignorance among health professionals and the public is the biggest challenge. “The few doctors who treat sickle cell in children are just passionate about it.”
So while cardiologists are heart specialists and oncologists in cancer, sickle cell disease has no specialty.
Prof. Christopher Ndugwa, a pediatrician is referred to as ‘Uganda's grandfather of sickle cell disease’. He has trained about 80 percent of the doctors who treat sickle cell disease in Uganda.
“I became passionate about sickle cell disease because it was neglected and children were suffering,” said Prof. Ndugwa.
Besides the few medical professionals, the statistics too tell a story of laxity.
At least 15,000 to 20,000 babies are born with sickle cell disease every year in Uganda and 80 percent of them die before their 5th birthday. As a single disease, it could be killing more under-fives than any other although the comparable statistics are scanty.
These figures are from 2014, the Ministry of Health survey carried out to establish the prevalence of sickle cell trait and sickle cell disease across Uganda.
Charles Kiyaga the national sickle cell coordinator at the ministry of health says the survey documented a high sickle cell burden with a national trait average of 13.3 percent and a disease burden of 0.73 percent.
But the distribution is not uniform across the country with some high burden districts; Gulu, Lira, Kitgum, Dokolo, Oyam, Tororo, Jinja, and Kampala have a prevalence of 20 percent and disease burden above 1.5 percent.
With these alarming figures, the ministry of health started newborn screening in the high burden districts covering a total of 274 health facilities and also equipping them with prophylactic drugs like penicillin, antimalarials, folic acid and training health workers in sickle cell management.
So far over 50,000 newborn babies have been tested.
One high burden district though remains an enigma. Bundibugyo situated at the border of Uganda and the Democratic Republic of Congo. It is one of the highest-burden districts with a prevalence of 21.7 percent of trait and 1.9 percent of disease and these figures have been constantly high since 1949.
A 1949 study put the prevalence of trait among people in Bundibugyo at 45 percent. Why its still a mystery is that except for its neighbor Ntoroko district with a trait prevalence of 15 percent all districts around Bundibugyo have a prevalence trait of less than 10 percent.
Scientists believe there is a need to investigate further the factors that predispose the Bamba tribe who predominantly live in Bundibugyo to more sickle cell disease as opposed to the districts around it. Of course intermarriages among carriers without knowledge promotes increased spread amongst communities.
Data from the 2014 survey has been useful as Uganda is now the only African country with current national prevalence data, which has also been published in a leading medical journal, the Lancet.
The research earned Uganda a reward. It was nominated to host the 6th International Symposium on Sickle Cell Disease (REDAC 2016) which happened last month and raised the profile of the disease among Ugandans.
Mass screening, patient management, early testing, counseling, and sensitization campaigns have been created. Pre-marital counseling and testing are being promoted in collaboration with religious leaders.
“We want it to become policy for every couple to test for sickle cell disease before they get married,” says Evelyn.
Dr. Jane Ruth Aceng the Minister of Health says there are plans to scale up newborn screening services in high burden districts and introduce hydroxyurea, which is a disease transforming drug.
She says the Ministry of Health also plans to implement a policy to administer the pneumococcal vaccine to children with sickle cell disease above 2 years to protect them from recurrent infections.
In an effort to increase advocacy and support groups, Evelyn says they have a Whatsapp group and self-help messages.
“We send each other messages if there is a child who is sick or one of our members. We also teach the families to have home remedies,” she says. These could be as simple as using hot water bottles for pain, drinking at least 3-4 liters of water per day, eating nutritious foods.
“If a child eats one egg, a sickle cell child will eat two eats every day. They’ve got to have enough proteins.” In her opinion and considering the pain she concludes, “it is easier to give birth to a child with HIV than one with sickle cell disease.”
After Evelyn and her boyfriend had dated for four years they decided to get married. They were young and so in love. The only medical check-up they bothered to take was HIV as was advised by friends and family.
Soon she was pregnant with a baby boy and another one came a year later. Evelyn’s hope was to have two and maybe another set of children later after securing a place in her career as a lawyer.
Henry the second child was sickly and not as strong as his big brother. They blamed it on the diet, the maid, low appetite, everything, whatever. The frequent visits to the hospitals and long nights of the child crying with unexplained pain sent the young parents panicking.
After many misdiagnoses by various physicians, one of them casually suggested a sickle cell disease test. The confirmatory test turned the young family into misery and eventually the husband left to remarry someone ‘normal’ which still leaves tears in Evelyn’s eyes.
Something else still hurts so bad. While seeking treatment for her little boy she was shocked when a doctor said to her “for those who succumb…it is nature’s way of cleansing the human race.” It meant her child would die anyway and it's then that she got determined to fight for him.
About 12,000 to 16,000 children below five years die of sickle cell disease annually in Uganda. Sickle cell disease has been declared a major public health problem for sub-Saharan Africa by the World Health Organization. However, its funding remains very low.
According to Evelyn, ignorance among health professionals and the public is the biggest challenge. “The few doctors who treat sickle cell in children are just passionate about it.”
So while cardiologists are heart specialists and oncologists in cancer, sickle cell disease has no specialty.
Prof. Christopher Ndugwa, a pediatrician is referred to as ‘Uganda's grandfather of sickle cell disease’. He has trained about 80 percent of the doctors who treat sickle cell disease in Uganda.
“I became passionate about sickle cell disease because it was neglected and children were suffering,” said Prof. Ndugwa.
Besides the few medical professionals, the statistics too tell a story of laxity.
At least 15,000 to 20,000 babies are born with sickle cell disease every year in Uganda and 80 percent of them die before their 5th birthday. As a single disease, it could be killing more under-fives than any other although the comparable statistics are scanty.
These figures are from 2014, the Ministry of Health survey carried out to establish the prevalence of sickle cell trait and sickle cell disease across Uganda.
Charles Kiyaga the national sickle cell coordinator at the ministry of health says the survey documented a high sickle cell burden with a national trait average of 13.3 percent and a disease burden of 0.73 percent.
But the distribution is not uniform across the country with some high burden districts; Gulu, Lira, Kitgum, Dokolo, Oyam, Tororo, Jinja, and Kampala have a prevalence of 20 percent and disease burden above 1.5 percent.
With these alarming figures, the ministry of health started newborn screening in the high burden districts covering a total of 274 health facilities and also equipping them with prophylactic drugs like penicillin, antimalarials, folic acid and training health workers in sickle cell management.
So far over 50,000 newborn babies have been tested.
One high burden district though remains an enigma. Bundibugyo situated at the border of Uganda and the Democratic Republic of Congo. It is one of the highest-burden districts with a prevalence of 21.7 percent of trait and 1.9 percent of disease and these figures have been constantly high since 1949.
A 1949 study put the prevalence of trait among people in Bundibugyo at 45 percent. Why its still a mystery is that except for its neighbor Ntoroko district with a trait prevalence of 15 percent all districts around Bundibugyo have a prevalence trait of less than 10 percent.
Scientists believe there is a need to investigate further the factors that predispose the Bamba tribe who predominantly live in Bundibugyo to more sickle cell disease as opposed to the districts around it. Of course intermarriages among carriers without knowledge promotes increased spread amongst communities.
Data from the 2014 survey has been useful as Uganda is now the only African country with current national prevalence data, which has also been published in a leading medical journal, the Lancet.
The research earned Uganda a reward. It was nominated to host the 6th International Symposium on Sickle Cell Disease (REDAC 2016) which happened last month and raised the profile of the disease among Ugandans.
Mass screening, patient management, early testing, counseling, and sensitization campaigns have been created. Pre-marital counseling and testing are being promoted in collaboration with religious leaders.
“We want it to become policy for every couple to test for sickle cell disease before they get married,” says Evelyn.
Dr. Jane Ruth Aceng the Minister of Health says there are plans to scale up newborn screening services in high burden districts and introduce hydroxyurea, which is a disease transforming drug.
She says the Ministry of Health also plans to implement a policy to administer the pneumococcal vaccine to children with sickle cell disease above 2 years to protect them from recurrent infections.
In an effort to increase advocacy and support groups, Evelyn says they have a Whatsapp group and self-help messages.
“We send each other messages if there is a child who is sick or one of our members. We also teach the families to have home remedies,” she says. These could be as simple as using hot water bottles for pain, drinking at least 3-4 liters of water per day, eating nutritious foods.
“If a child eats one egg, a sickle cell child will eat two eats every day. They’ve got to have enough proteins.” In her opinion and considering the pain she concludes, “it is easier to give birth to a child with HIV than one with sickle cell disease.”
NB: Lynn Najjemba a journalist by training has a dear son very ill, a sickle cell sickler who needs to have a bone marrow transplant. For any contributions you can make towards this cause please contact Najjemba directly on +256704 026 888/ lynn.najjemba@panosea.org or follow the tweet #savekacie
