Turning the ordeal into commitment: Leyla Hamidou, DES, Niger

Born in Niger, Leyla Aïssa Hamidou was diagnosed with sickle cell disease at the age of two. As a teenager, her crises became more frequent and severe complications set in. At eighteen, necrosis affected her hips and shoulders; with no specialized facilities available in Niger, she was operated on in France, where she received two hip replacements. Back in Niamey, she put her life on hold to focus on her rehabilitation. "I really missed out on part of my life because of the disease and its complications," she says.

Today, Leyla follows her core treatment in Niger and continues to be monitored regularly abroad to prevent new complications. For her, living with sickle cell disease has become a commitment: "It allowed me to become an example for my community — an advocate. I felt the need to become an advocate because the need was there. In Africa, so many things are still undeveloped."

In 2022, Leyla founded DES – Drépanocytose Éducation Santé (Sickle Cell Education and Health), with a clear mission: to raise awareness and educate the population, and to support young adolescents living with sickle cell disease in schools. Working with the Ministry of Education, DES runs workshops and rapid screening sessions directly in schools: with a single drop of blood, students can learn their status, with their parents' consent. To date, the organization has worked in some twenty schools.

"In Niger, sickle cell screening is not mandatory at birth, so many young people don't know their status. They often marry early, right after their studies, which is why we encourage them to find out. The only real solution here remains prevention," Leyla explains. The biggest challenge is parental consent: in each campaign, only about half of the students come back with a signed authorization from their parents.

In her daily work and during her workshops, Leyla relies on SCKIN's SickleCellPedia AI assistant, right on her phone. "With the app on my phone, I can answer quickly. What it gives me is the right answers in real time."

She remembers an awareness session at a school where the students asked her for a live demonstration of the app — a chance to show that reliable information about sickle cell disease can fit in the palm of a hand. Since DES started using these tools, "we have much more accurate data" to share with communities.

Her advice to other organizations? "Yes — I already recommend it to other organizations like mine, because it makes our work easier."