Kinshasa, June 22nd, 2025 (CPA).- Children with sickle cell disease were encouraged to break the silence and take action today to heal tomorrow during an awareness and training day on the disease held on Saturday in Kinshasa, the capital of the Democratic Republic of Congo (DRC), under the theme: ‘Malaria and hydroxyre.’
« I am honored to speak on behalf of my dear friends to address a crucial issue, awareness of sickle cell disease, which is a hereditary genetic disease. Invisible to the naked eye, it is nevertheless a painful reality for those who suffer from it. Day after day, often in silence, the disease is too often misunderstood, ignored, or even minimized within our populations. It is a painful reality. That is why we must break the silence and act today to heal tomorrow, » said David Mba, a child with sickle cell disease. ‘When we talk about sickle cell disease, we allow children to be born with this disease without adequate screening. Families live in a state of misunderstanding, young people suffer in silence without being believed or understood. This silence is not just a lack of words, it is a lack of sensitivity,’ he added. According to Mr Mba, who is also a student at the National Institute for Building and Public Works (INBTP), silence is a major obstacle to prevention and a barrier to hope.
« Why raise awareness? We must raise awareness because sickle cell disease is little known, poorly understood and too often considered unimportant. Our responsibility is to make the invisible visible and to mobilize society, institutions and the government around this disease, » he said, before emphasizing that mobilization must be collective, because sickle cell disease is not just a matter for doctors, nurses or careers. « Together, we must become agents of change for better knowledge, better care and a fairer future for patients. We must remember that sickle cell disease is not just a disease, it is a daily reality for thousands of families. Today, we can make our voices heard, share our knowledge and open our hearts to better help and, above all, better understand it, » he said.
Parents: a strong support system for children with sickle cell disease
In addition, Dieu-merci Kembo, a sickle cell patient and second-year doctoral student at the Faculty of Medicine at Simon Kimbangu University (USK), also highlighted parents as a strong support system for children with sickle cell disease.
« Today, I address you with all the respect, love and admiration you deserve. Being a parent is never an easy task, but being the parent of a child with sickle cell disease is a burden that few can understand, except those who live with it every day. You go through day and night with incredible strength, between unpredictable crises, hospitalizations, treatment, worries and, above all, the infinite love you give us, even when you are tired, afraid and in pain. You are silent heroes, solid pillars, even when everything is shaking, your hearts filled with tenderness despite the trials, » he said. « I want to tell you this: you are not alone. Every tear you have wiped away, every moment you have prayed, every sleepless night spent at your child’s bedside, all of this is a testament to your courage. And that courage deserves to be honored.
Keep believing, keep fighting.
Your presence, your patience, your love give your children the strength to rise up, to smile and to hope, » he added. Healthcare workers urged to show kindness to sickle cell patients Dorcas Kabila, a child with sickle cell disease, urged healthcare workers to show kindness to sickle cell patients. « World Sickle Cell Day, celebrated every 19 June, is not only a time for raising awareness, but also a testimony to the silent and often painful struggle of all those living with sickle cell disease. In this silence, extraordinary people have risen up, you, the healthcare staff, who echo our suffering.
If you are committed body and soul to our health, your presence at our side must be accompanied by kindness, patience and invaluable expertise. Despite your dedication, we would like to address certain everyday realities that can make us happy. We hope to be treated with more kindness and courtesy, especially when the pain is unbearable, » she said. ‘We ask you to take a moment to consider our pain, rather than telling us that we are exaggerating or managing our pain a little,’ lamented Dorcas Kabila, also a medical student at the Catholic University of Congo (UCC), before emphasizing the importance of communicating effectively with careers and nurses of sickle cell patients. She also denounced the stigma and prejudice often suffered by children with sickle cell disease, while honoring the unfailing commitment of healthcare workers. « These words are addressed to you, dear healthcare workers.
We will never cease to be grateful for what you do. We honor your unwavering commitment. You have saved lives and given hope to those who had lost it. You have shared our pain, allowing us to share hope. Thanks to you, we salute the courage of patients and the patience of families, » said the medical student. « We remind you that every word, every gesture, every action on your part counts immensely. Thank you to each and every one of you for your presence, your listening and your commitment, » she concluded. This awareness-raising and advocacy campaign for sickle cell disease was organized on the sidelines of International Sickle Cell Day, celebrated on June 19th, each year, by the biomedical research institute ‘One Health’, through its support, training and monitoring platform on sickle cell disease (Pafoved) in collaboration with the Health Support Training Centre (Cefa/Monkole).