Al-Sabah Children's Hospital. (Photo: Courtesy).

El Sabah Children’s Hospital has recorded over 300 cases of sickle cell disease in two years without diagnostic facilities, according to the Executive Director, Dr. Justin Burono Tongun.

He made the remarks on World Sickle Cell Day, adding that South Sudan lacks a national survey on the disease, which makes the true burden unknown.

Dr. Tongun said the absence of diagnostic equipment at the hospital forces some parents to travel to neighboring Uganda for testing, while others are unable to access diagnosis due to cost.

“Data for sickle cell is lacking. At the moment in El Sabah, in two years we have recorded 300 cases or more, and we are still recording more. We need support to get comprehensive data for South Sudan. We already have a protocol to study sickle cell across the country, but we need funding to implement it and determine where the burden is,” he said.

He said the lack of diagnostic services continues to affect access to care.

“For testing, it is very expensive for people to travel. We brought it to a private facility, but it is still not affordable. There are only a few centers in the country that can test, maybe two or three, and it is still beyond the reach of ordinary people. Please help us get the diagnostic materials,” he added.

Dr. Tongun called for the establishment of a diagnostic facility at El Sabah Children’s Hospital to make testing more accessible and affordable.

Sickle cell disease is an inherited blood disorder in which red blood cells become sickle-shaped, blocking blood flow and causing pain, anemia, infections, and organ damage.