Sickle cell disease remains a major public health challenge in Uganda

Sickle cell disease remains a major public health challenge in Uganda with nearly 20,000 newborns affected every year.

The inherited blood disorder causes severe pain in patients, and many children in Africa with the disease die before their fifth birthday due to late diagnosis.

However, access to care is beginning to change this, while scientific breakthroughs are also bringing hope for a permanent cure.

It has been a gruelling twelve-year journey to a sickle cell clinic in Kayunga for Irene Nalukwago, whose daughter was born healthy at the hospital, east of the capital, Kampala.

But at six months old she started falling sick and becoming anaemic. Nalukwago said they started giving her daughter transfusions almost every week, but she was in a lot of pain.

It was then that doctors began to suspect a deeper problem.

Tests later confirmed sickle cell disease. Now 12-years-old, repeated attacks of the inherited genetic blood disorder have left a heavy toll. 

"She became paralysed on the left side of her body; I just had to carry her," said Nalukwago.

Thousands of children, like her daughter have gone years without early diagnosis and proper treatment. Uganda has now scaled up mandatory screening for newborns across the country.

"All our children are started on hydroxyurea as early as nine months,” said Dr Isaac Tumusiime who is medical officer at Kayunga Referral Hospital.

The oral prescription medication lowers the number of painful attacks and the need for blood transfusions.

“And there is continuous supply so there is good adherence to the treatment as well, so most of the children have managed to survive through this setup," he said.

Medical professionals agree that early diagnosis is vital, helping to manage the condition before it becomes severe. 

Patients at the clinic in Kayunga understand that staying on top of routine check-ups can help them remain healthy and avoid life-threatening complications such as strokes.

Doctors say regular monitoring allows problems to be detected early, easing pressure on already stretched health workers, while giving patients a better chance at longer, healthier lives.

Now science is proving that a cure is possible. A gene therapy treatment that could potentially end years of suffering for many patients has been rolled out in some countries. 

Tumisiime said they encourage parents to manage their children on hydroxyurea “with a hope that maybe one day gene therapy could be affordable".

For the moment, it remains out of reach for the majority of people who need it most.