On June 19, Uganda joined the rest of the world to commemorate World Sickle Cell Day under the theme “Break the Silence, Let’s Care”. This day is especially commemorated and dedicated to promoting increase public knowledge and raise awareness of sickle cell disease while highlighting the challenges faced by the people living with the condition.
Sickle cell disease causes progressive organ damage and episodes of severe pain and acute illness. These episodes result from the sticky and stiff red blood cells which clog tiny blood vessels.
In Africa, Uganda has the fifth highest sickle cell burden and this condition affects every tribe, religion and social class. Sadly, the greatest majority of our population is not aware. The Ministry of Health indicated that 13.5% of our population is carriers of this condition.
The prevalence of the condition varies by region and district. Being a carrier means that a person has a chance of having a child with sickle cell if they have a baby with another carrier. Such unions continue to add to the sickle cell burden in Uganda.
This means that every one, has a responsibility to know their sickle cell status.Couples should be encouraged to take a sickle cell test.
Knowing your sickle cell type and making conscious decision in regards to choosing one’s husband/wife can result in a sickle cell disease free society. Screening is the first step in breaking the cycle of sickle cell disease. Persons with sickle cell trait should have counseling in order to better understand this.
Currently about 25,000 babies are born with sickle cell disease every year. Up to 80% of those born will die before their fifth birthday without proper medical care. We know from the developed world that newborn screening, penicillin prophylaxis, and comprehensive care are associated with a 70% reduction in early deaths from sickle cell disease.
However, these are yet to be effectively replicated in Uganda. The Ministry of Health has already rolled out newborn screening in high burden areas, but uptake is still low. As parents, it’s our responsibility to request a sickle cell test when our babies have been born.Early diagnosis and treatment saves lives.
After newborn screening, comprehensive care is required to be able to holistically manage and care for people living with sickle cell. However, this is still a challenge across the country because the numbers of specialized sickle cell clinics is still very low.
As organizations working in the sickle cell space,we need to work hand in hand with the Ministry of health to support the establishment of sickle cell clinics in a sustainable manner. In the same spirit, the Ministry of Health with the team of researchers from Makerere University shared results from a Hydroxyurea study, where they highlighted that this drug is safe in Uganda.
However, that drug is not yet supplied by the Government and the market cost is very prohibitive. As we commemorate this day, we need to remind the government of the need to avail hydroxyurea to the thousands of Ugandans living with sickle cell disease. Every child deserves a chance to have a productive life. Early diagnosis with prescribed medical care can offer that possibility.
With just some basic early health care and regular follow up. Babies could have a chance Babies don’t have to die. This will ensure that people living with sickle cell will become productive members of society, having families, jobs and contributing to the development of Uganda.
But as a community we have to first care and provide a supportive environment for our families struggling with not so much the disease but barriers created by an uncaring society.
This year’s theme “Break the Silence, Lets Care”, especially highlights two important aspects in the fight against sickle cell disease. First, breaking the silence and the need for awareness. The Uganda Sickle Cell Rescue Foundation, working with Buganda Kingdom and Ministry of Health have utilized the Kabaka’s birthday run to raise awareness. However, more needs to be done. We are still faced with issues where schools refuse to admit students because of sickle cell and cases where husbands still blame their wives for bringing sickle cell into their homes. This therefore calls for concerted efforts to increase awareness of this condition in Ugandan communities.
Secondly “Let’s Care”. Living with sickle cell disease is worsened by limited and hard to access formal support programs to help patients and families cope with the physical and psychosocial burden of sickle cell. People living with sickle cell are stigmatized and suffer discrimination from others who do not understand the disease. This results in the person who lives with sickle cell to be isolated from family and the entire community.
In a recent study conducted by the Uganda Sickle Cell Rescue Foundation with researchers from Clarke International University, 68.7% of the people interviewed said they cannot marry a person with sickle cell.
Sickle Cell disease is not contagious. A person cannot get it through sex or interacting with someone who has it. This stigma is also fueled by labeling people with sickle cell as “sicklers”.This perpetuates the stigma unjustifiably associated with the disease. Clearly, this is a big problem.
As we commemorate this World Sickle Cell day, let us show some compassion to people living with sickle cell. Let us all avoid the stigma and discrimination. Above all, let us all take a sickle cell test today.
If you know someone with sickle cell give them a hug, get to know them as the warriors they truly are.
The writer is a person living with Sickle Cell disease and is the Executive Director of Uganda Sickle Cell Rescue Foundation.
Sharifu Kiragga Tusuubira