Stop stigmatising sickle cell victims — Bunyoro premier Byakutaga

MASINDI - Bunyoro Kitara Kingdom premier Andrew Byakutaga has condemned the stigmatisation of people suffering from sickle cell disease (SCD), describing it as a bad habit that should not be tolerated.

Sickle cell disease is an inherited condition affecting red blood cells. The most serious type, sickle cell anaemia, causes blood cells to change shape, live shorter lives and block blood vessels.

It is a lifelong condition with no cure yet, but early diagnosis and treatment can make a big difference.

"You should stop stigmatising, isolating and hiding sickle cell victims but instead encourage, guide and help them when they're in need," Byakutaga said during a sickle cell awareness walk in Masindi town on September 27, 2025.

The walk was organised by Miss Bunyoro, first runner-up 2024/25 Swabura Katusiime, in partnership with the Austin Sickle Cell Support Organisation (AUSSO) and other partners.

Byakutaga, who was the chief walker, was joined by  Masindi Kitara Diocese bishop Joshua Kugonza and other stakeholders.

Premier warned parents with sickle-cell disease to always seek medical attention, noting that many people associate the disease with Satan, which is a myth.

"As a kingdom, we are going to continue supporting you in creating awareness about sickle cell. Awareness has been raised on many diseases, but minimal on sickle cell."

Global and regional context

Globally, SCD affects 7.7 million people, causing 34,000 direct deaths annually, with 80% of cases in sub-Saharan Africa. 

Uganda ranks fifth in Africa for disease burden, with 13.3% of children carrying the sickle cell trait.  A national sickle cell survey conducted in 2014 by the health ministry, in collaboration with Makerere University College of Health Sciences and Cincinnati Children’s Hospital, revealed that Northern Uganda bears the heaviest burden, with a sickle cell trait prevalence of 18.6%, and some communities recording rates as high as 63%.

The east-central region follows with 16.7%, while the mideastern and southwestern regions show 16.5% and 4.1%, respectively.

Emmanuel Majala, 63, a sickler, said that it's not true that SCD sufferers die early, adding that they die due to mistakes made by themselves or by their parents. (Credit: Yosam Gucwaki)

Church Support

Kugonza said the Masindi Kitara Diocese will join the sensitisation campaign to demystify the myths surrounding sickle cell. 

"Sickle cell touches us a lot, and testing to know our genotype is the most important step in preventing this killer disease. I'm appealing to other stakeholders to also join this noble cause."

Have model families

Byakutaga also encouraged the people of Bunyoro to ensure they have model households that can support their families with proper medical care, education, and good nutrition. 

"As a kingdom, we can't be happy when we have a sick population. We also need to have well-off people, but this can be achieved when you embrace high-yielding crops like coffee."

Awareness and Support

AUSSO chief executive officer Annette Kagoro Nabukeera said SCD is rampant in Bunyoro, and most people are vulnerable but cannot afford medication and nutrition supplements.

"Most of the mothers are single and vulnerable, and worst of all, many people associate this disease with Satan, which needs to be debunked," she said.

Nabukeera added that the organisation has been supporting over 50 sicklers with medication and other necessities.

The idea to organise the awareness walk was conceived by Swabura Katusiime after seeing the disease claim many lives. 

"The aim was to show the public that sickle cell is a big issue, but can be prevented.
"People who aren't married need to ensure they know their genotype because it's the only preventative measure," she said.

According to Katusiime, many people don't know how sickle cell can be prevented and also how it can be managed.

During the same event, testimonies were made to encourage the people living with SCD and also parents of sicklers to manage their condition.

Emmanuel Majala, 63, a sickler, said that it's not true that SCD sufferers die early, adding that they die due to mistakes made by themselves or by their parents.

He said he has survived for long because he followed experts' instructions.

"Sicklers are not supposed to be exposed to coldness. A sickler who is school-going should have a sweater with a hood. Physical education isn't good for a sickle because we are too weak, they are not supposed to eat much, they've specific foods they're supposed to eat."

He added that it is the responsibility of a parent and a sickle cell patient to always follow the instructions and the guidelines given to them. We are not supposed to be subjected to hard work, and also taking them for swimming isn't good," he said.

He urged parents to desist from using herbal medicines, but choose medicines prescribed by the physician.