Twice a month, Sunday Komakech, 32, a resident of Pawel Langetta Village in Atiak Sub-county, Amuru District, walks eight kilometres to Pawel Langetta Primary School with two of his children who are suffering from sickle cell disease. The purpose of this journey is to share information with other parents whose children also have the disease.
“After diagnosis, not much information is given to parents whose children test positive for the disease. This is why parents have opted to start an association through which information is shared, Komakech says, adding that when he lost a child who was also suffering from sickle cell disease, his wife left the family home for fear of giving birth to children who would die anyway.
“Now that the youngest child has the disease, I am worried that my new wife too might abandon me,” he says.
Since there is lack of information about the disease and a number of people still believe that it is due to witchcraft, Komakech says parents hope that through their organisation, they will be able to get assistance from the government. His plight is not different from experiences other parents of children suffering from sickle cell disease go through due to information inadequacy and myths the locals possess.
Sickle cell anaemia is a blood disorder that causes red blood cells to change shape, clogging up arteries and causing a variety of related health problems such as pain, organ damage and stroke. Symptoms vary from mild to severe, and it can be fatal in some cases. Its prevalence is between 20 and 30 per cent while in some parts of Uganda, it is as high as 45 per cent. Martin Odokonyero, the chairperson of Parents of Children with Sickle Cell Association in Amuru District, says the sickness is tearing apart marriages every single day.
“Many parents have neglected their children and many have died since they cannot afford to take care of themselves,’’ Odokonyero says.
He says as parents, they face a lot of stigma and do not attend social functions in the district for fear of being side-lined and called names.
“A number of residents believe that we bewitched our children. Sometimes, they even stop their children from interacting with ours with the belief that they would also become sick,” he says.
Vicky Atim, the head teacher Pawel Langetta Primary School in Amuru District, says a number of teachers do not know how to take care of children suffering from sickle cell disease and therefore, fear to work with them. She adds that they also lack knowledge and basic information about the disease
“Many of us do not have information on how best we can help these children while at school yet we spend a lot of time with them. We need to be trained by the government on how to take care of these children just like it was done with those living with diabetes,” Atim says.
The association coordinator, Sr Doreen Oyella, says the disease has led to increased domestic violence which causes parents to separate and this has led to the death of many children who are in most cases left with no one to take care of them.
“We have witnessed a lot of violence in families and separation, blame, fight, unrest poverty, fear, character assassination. Since some parents also believe that their children are under a spell, they find it very easy to walk away,” Sr Oyella says. She notes that so far, they have registered more than 60 families with sick children.
“We appeal to the Ministry of Health to support health centres in rural areas with supplies and sensitisation campaigns where parents can receive the information needed to be able to take care of their children,” Sr Oyella says.
Sr Oyella adds that the prices of the drugs should also be subsidised so that parents are not forced to opt for alternative local medication, a mixture of different herbs, which are sometimes not as effective.
“However, even the option of using alternative medication seems to be hitting a dead end since their prices have also risen from Shs55,000 last year to Shs90,000, which a number of parents cannot afford,” Sr Oyella says.
Dr Vince Omona, the sickle cell in charge at St Mary’s Hospital, Lacor, says the hospital registered more than 1,169 new cases of sickle cell disease between 2017/2018 adding that re-attendance at the facility indicates more than 1,865 people living with sickle cell disease.
He attributes these high numbers to lack of sensitisation where many couples are not screened for the disease before getting married.
“A number of people, especially in rural areas do not know anything about the disease. Government should therefore focus on health education. Also, screening of new born babies should be mandatory, Dr Omona says.
Amuru District chairperson Michael Lakony says the ministry of Health should consider rolling out countrywide mass sensitisation campaigns about the disease. “As a district, we do not have the capacity to carry out sensitisation campaigns,’’ he adds.
To this, Emmanuel Ainebyoona, the spokesperson at the Ministry of Health, says government has been sensitising the public through its sickle cell campaign though with some challenges.
“As part of the ministry’s strategy, couples are encouraged to go for screening before marriage to reduce the rate of prevalence,” Ainebyoona says, adding that government also plans to make sickle cell drugs affordable to all.
Signs to watch
Dr Philip Kasirye, the head of sickle cell clinic at Mulago National Referral Hospital, says when dealing with children suffering from sickle cell desease, and a child has a high temperature, body weakness, chronic headache, blurred vision in one or both eyes or pain in the private parts, especially for the boys, you must seek medical attention immediately.
He adds that it is advisable to teach your child with sickle cell disease about basic care, which will help them live independently and lead a normal life.
“Let them know which medicine they take, their prescription and also learn to avoid situations that trigger the crises,” he says.
There is free sickle cell screening at CPHL in Butabika and various treatment centres in the country including; Mulago, Kasana health centre IV, Nsambya, Naguru, Mbuya, Iganga, Jinja, Kamuli, Namwendwa, Atur, Soroti, Lacor, Masaka and many others.