Support people with Sickle Cell Disease
Bring patients out of marginalisation and provide a pathway to medical treatment, local support groups and dignity.
For marginalised patients, medical knowledge and local support groups are crucial for their health and wellbeing.
To discuss supporting this project contact jo@justpeoples.org
Sickle Cell Disease (SCD) is highly stigmatised in rural communities of sub-saharan Africa. This genetic blood condition causes red blood cells to take on a crescent shape, leading to blood clots, severe pain and chronic anaemia. When left untreated, sickle cell disease can lead to organ damage, disability and death. It predominantly affects individuals of African or Caribbean heritage and, in Kenya alone, it is estimated 14,000 children are born with the condition every year.
Traditional communities who lack education and awareness of the disease believe SCD is a result of ancestral curses, acts of witchcraft and bad omens. This misinformation results in families hiding SCD patients away due to extreme levels of stigma, discrimination and marginalisation. These factors lead some parents and caregivers of patients to refrain from seeking medical care and support for their children.
Lea Kilenga - who lives with SCD and grew up with this severe stigma - is working to change how patients live, across all Kenya. Through this project Lea and her dedicated team of advocates and health professionals will raise awareness of Sickle Cell Disease in communities where dangerous misconceptions persist. Beyond awareness, Lea aims to facilitate the formation of Community-Based Organisations (CBOs) to ensure continued care and support within these communities. She will simultaneously establish a broader support group for patients all over the country by setting up an online virtual community of individuals affected by SCD.
Lea will achieve this mission by organising groundbreaking events in SCD hotspot communities, attended by health professionals, policy makers and patients who will share their inspiring success stories - including Lea herself. They’ll screen an informative and engaging documentary on SCD which will dispel myths surrounding the disease in an accessible way. Structured panel discussions will follow each screening, aiming to address the communities’ concerns, clarify misconceptions and encourage open dialogue.
Lea debunking myths about Sickle Cell Disease to families in a remote, conservative Kenyan village.
A crucial aspect of the project is to empower communities to take charge of their own care. Following the initial live events, communities will be guided to form their own cooperative organisations to act as self-sustaining units under the umbrella of Lea's organisation (ASCO). These local groups will advocate for access to healthcare, awareness for other patients to get support, and conversations with regional policymakers to improve government support for patients.
Recognising the importance of a broader support network, Lea will also establish an online support group. This virtual space will connect individuals affected by SCD beyond geographical boundaries and will focus on their mental health and wellbeing, providing a platform for shared experiences, mutual support, and the exchange of valuable information.
Through live community events, panel discussions, and the establishment of local and broader support networks, Lea’s work will bring Sickle Cell Disease patients out of marginalisation and provide access to medical treatment, mental health care and dignity.
Meet Lea
The woman with Sickle Cell Disease ensuring treatment is accessible to all patients.
Lea's advocacy journey began when she encountered the harsh reality of the social stigma associated with her condition when a new boy at her school discouraged other children from sitting next to her. She recalls her efforts to appear "normal," taking daily medication, frequent doctor visits, and routine blood transfusions, believing these were part of every child's life. But it was that moment when the new boy branded her "peculiar and contagious" due to her visible symptoms that shattered the illusion. Many of her classmates fell for this harmful narrative, resulting in Lea's isolation as she stopped attending school for three long months. Learn more.