Buganda asks couples to test for sickle cells before marriage

A nurse at Mulago conducts a review on a sickle cell patient. The  World Sickle Cell Awareness Day is observed annually with the goal of increasing public knowledge and a understanding of the disease, and  challenges experienced by patients and their families and caregivers. PHOTO/FILE/COURTESY 

What you need to know:

  • In Uganda, the plight of those suffering from sickle cells is aggravated by limited formal social support structures to aid patients and families that would enable them cope better with the psychosocial burden of the sickle cell disease. 

Authorities in Mengo marked the 2021 World Sickle Cell Day with a renewed call for testing before marriage as part of Kabaka’s efforts to ease the burden of a disease that continues to contribute to death of children.

At least 20,000 babies in Uganda are born each year with sickle cell disease of whom 80 per cent die before celebrating their fifth birth day. 

Sickle cell disease is an inherited chronic condition that affects nearly every system in the body. However, Ministry of Health officials say early detection of complications and comorbidities is essential to limiting morbidity and mortality, and improving quality of life.

Buganda Kingdom has been at the forefront of fighting the disease. 
In a statement issued ahead of the Word Sickle Cell Day  commemorated every June 19, Buganda premier Charles Peter Mayiga, advocated for an end to discrimination and stigma and encouraged couples intending to get married to get tested.

“Approximately 5 per cent of the world’s population carries trait genes for hemoglobin disorders, mainly, sickle-cell disease…the condition is worsened by stigmatisation and discrimination against people living with the disease, causing isolation from family and society,” the Katikkiro wrote on June 17.

He added: “The Kingdom of Buganda has contributed to increasing positive responsiveness (awareness) towards the sickle cell disease, and continues to do so by integrating sensitisation programmes about the disease in all health related kingdom activities….We remember those we continue to lose to this disease and we extend our support to those living with it.”

The  Health ministry permanent secretary, Dr Diana Atwine, reiterated government commitment in the fight against stigma and discrimination.

Dr Atwine acknowledged Kabaka’s efforts in the fight against sickle cell disease and pledged care and support, before urging the public to join the fight.

Support
For three consecutive years: 2016, 2017 and 2018, the  Buganda Kingdom purchased medical items needed in the diagnosis of the disease and distributed them to a number of health facilities. 

“As may be remembered, proceeds from the Kabaka’s Birthday Run were dedicated to the fight against the disease,” the Katikkiro’s statement revealed.

He added: “We believe this was a modest though worthy effort in the awareness and prevention campaign aimed at curbing the sickle cell disease in Uganda.” 

A national-wide survey in 2014, depicted a high prevalence of sickle cell trait and disease national-wide, with a national average of 13.3 per cent trait and 0.73 per cent disease.

Since sickle cell anemia is an inherited red blood cell disorder in which there aren’t enough healthy red blood cells to carry oxygen throughout the body, the Katikkiro asked parents, care givers and affected individuals to continue seeking treatment and guidance from the health workers.

According to the association of people living with sickle cell, worldwide, sickle haemoglobinopathies lead to a substantial burden of disease that is not adequately addressed. 

Accurate data is lacking, but the worldwide estimate for neonates born with sickle cell each year is 400 000, including 300 000 with sickle cell anaemia. 

The greatest burden is seen in sub-Saharan Africa, where more than 75 per cent of all sickle cell disease occurs, with this proportion projected to increase by 2050. In Africa, sickle cell disease contributes substantially to mortality in children younger than five years.

Figures
Approximately 5 per cent of the world’s population carries trait genes for hemoglobin disorders, mainly, sickle-cell disease. In Uganda the disease burden was 0·8 per cent in 2016, which suggests that at least 15,000 babies per year were born with the sickle cell disease.

In Uganda, the plight of those suffering from sickle cells is aggravated by limited formal social support structures to aid patients and families that would enable them cope better with the psychosocial burden of the sickle cell disease.