Steward Ojok (10), who suffers from sickle cell disease can’t write his name.
GULU-UGANDA: I tasked ten year old Steward Ojok to write down his name on my notebook, but he was hesitant, saying he did not know how to write his name. When I insisted on him writing any letter that he knows which forms his name, Ojok wrote the letters “OLIO” instead of the correct spelling of his surname-Ojok. Ojok is a primary one pupil of Angaba Primary School in Koro sub-county in Gulu district, Northern Uganda.
I first met Ojok together with his forty-year-old mother, Grace Ajok, from Kaunda Ground in Gulu Municipality on Sunday June 19, 2016 during the fourth National Conference commemorating the World Sickle Cell day. Ojok is one of the world’s statistics of persons suffering from sickle cell disease.
“I find challenges raising him to be a normal child like his other brothers and sisters not suffering from the disease, especially during cold season. He needs warm clothing and a pair of gumboot. Every single day, I must keep some emergency money to rush him to St. Mary’s Hospital if he falls sick”, says Ajok. She says she needs at least twenty dollars (UGX65000/=) every day of the week to cater for transport to hospital and medication.
Ajok says in 2006, she realized that her two-week old son was suffering from a strange illness, when he developed swellings on both hands and feet. “His hands and feet developed swellings; which was abnormal. So I decided to take him to Lacor Hospital. Where he was examined, doctors broke the news to me that he was suffering from Sickle Cell disease. I was devastated. I had not heard of the disease before”, says Ajok.
Sickle cell disease refers to a group of inherited hemoglobin disorders characterized by a predominance of abnormal sickle hemoglobin in red blood cells. Sickle cell anemia, which results from the inheritance of sickle hemoglobin from both parents, is the most common and severe form of sickle cell disease.
According to Mr. Sharif Tusuubira, the Executive Director of Uganda Sickle Cell Rescue Foundation, the worldwide estimates for neonates born with sickle cell disease each year is 400,000, including 300,000 with sickle cell anemia.
“Worldwide, sickle cell hemoglobin disorders lead to a substantial burden of disease that is not adequately addressed. Accurate data are lacking, but the worldwide estimate for neonates born with sickle cell disease each year is 400,000, including 300,000 with sickle cell anemia. The World Health Organization (WHO) states that 50%-80% of children affected die before five years”, says Sharif, in a press statement.
The greatest burden is seen in sub-Saharan Africa where more than 75% of all sickle cell disease occurs, with this proportion projected to increase by 2050. In Uganda alone, a recent study by Ministry of Health indicates that the prevalence of sickle cell trait in Uganda ranges from 2.5% to 23.9% with the highest percentage in northern Uganda, ranging from 17%-21%”. In Gulu district alone, a survey carried out between May 2014 and April 2015 indicates that 2,135 were tested and confirmed to be suffering from sickle cell.
An official from the Ministry of Health at the Gulu commemoration, Dr. Gerald Mutungi revealed that his ministry started to conduct neonatal screening of all new-born babies from hospital since 2014 as a measure to prevent further spread of sickle cell disease.
“We are overwhelmed by the trait of sickle cell disease. We want to prevent further spread of sickle cell. Let us stop people having the disease. That is why we started neonatal screening in 2014” says Dr. Mutungi.
Speaking as guest of honor during the function, Uganda’s Minister of Relief, Disaster Preparedness and Refugees, Engineer Hillary Onek, thanked sponsors of the Uganda Sickle Cell Rescue Foundation for contributing to humanity through giving hope to people suffering from Sickle Cell. He said he will support any bill or policy which will come to cabinet on sickle cell.
“Thank you all who contribute to humanity in looking after people suffering from sickle cell disease. You should continue with your good gestures so that all children who are suffering from sickle cell go to school. You should count on me if anything comes to cabinet about this disease”, says Minister Onek.
According to Dr. Guarav Kharya, Consultant Pediatric Hemto-Oncology Immunology and Bone Marrow Transplant with East Delhi Pediatric Hemato-Oncolgy Clinic, India, bone marrow transplant operation which cures sickle cell completely from one suffering from the disease costs $25,000.