Haemophilia and sickle cell disease: together for greater impact

What better occasion than World Sickle Cell Day to share how NNHF partners are positively impacting the lives of people living with blood disorders? Learn about the similarities between haemophilia and sickle cell disease and how the project teams are raising awareness in Zambia.

World Sickle Cell Day is on 19 June, just two months after World Haemophilia Day. Both dates are of crucial importance to the partners involved in the second NNHF-supported project in Zambia. When the project began in 2020, the team initially set their sights on raising awareness at grassroots level to increase diagnosis and improve care for haemophilia across four regions. As they worked together towards these objectives, the project team realised that people living with sickle cell could also benefit from their activities.

Greater awareness is also needed for sickle cell disease, a group of disorders affecting the red blood cells. As with haemophilia, early diagnosis is essential to ensure treatment and prevent life-threatening complications. The Haemophilia Foundation of Zambia works closely with its sister organisation, the Zambian Childhood Cancer Foundation (ZACCAF), whose mission is to provide holistic care for children with cancer, life-threatening blood disorders and their families through practical psycho-social support programmes. The two organisations are finding that synergies between haemophilia and sickle cell disease make it worthwhile to join forces.

“It’s about the impact we can make for people with both diseases in Zambia. Rather than working in isolation, we have an opportunity to inform people gathered in a ward not just about haemophilia but also about sickle cell disease, as the two conditions are often confused and share similar challenges,” says Chilufya Pikiti, founding member of the Haemophilia Foundation of Zambia and the father of two boys with sickle cell. “Having a child with a life-threatening blood disorder has ignited our zeal as parents to create awareness and advocate for others.”

Together, the partners chose World Haemophilia Day on 17 April 2021 for the official opening of the Haemophilia and Sickle Cell Treatment Centre in Chinsali. The inaugural event was held in collaboration with ZACCAF and the Ministry of Health in the presence of key representatives of regional and local authorities. The centre has already begun conducting weekly consultations and registered over 50 patients, almost half of whom live with sickle cell disease.

People living with haemophilia and sickle cell share many of the same challenges: lack of diagnosis, misdiagnosis and stigmatisation. In both cases, relevant information is crucial to obtaining an accurate diagnosis. Among its priorities the Zambia 2 project is targeting the training of community health workers and healthcare professionals on haemophilia, with some information on sickle cell disease as well.

Maxwell Chulu, 34 years old, knows how easy it is to confuse the two disorders, and how big a difference access to care can make. As a person who has lived with severe haemophilia A since childhood and now has a daughter with sickle cell disease, his story brings home the reality of how these diseases touch not just individuals but entire families, and for a lifetime:

“Living with haemophilia myself, it came as a shock to hear that my child has sickle cell. We never knew what was wrong with her, why she cried all the time. One day, at eight months, our baby had swelling in her leg. I thought it was haemophilia, so we went to the hospital for help. Following her diagnosis with sickle cell, we’re grateful for the support of our family and the Haemophilia Foundation of Zambia. I hope that the improvements we have seen in haemophilia care will soon be a reality for people living with sickle cell.”

Pooling resources to jointly raise awareness will help make a difference in Zambia, where haemophilia prevalence is relatively low but many people with sickle cell still die undiagnosed due to lack of awareness. Adopting a shared approach where possible is also delivering results in other African countries such as Kenya, Tanzania, and the Democratic Republic of Congo, where NNHF partners are increasingly joining forces to benefit more people living with blood disorders.

World Sickle Cell Day 2021

Raising a warrior as a bleeder

Maxwell Chulu from Lusaka, Zambia