Living with sickle cell disease requires more than medical care; it calls for resilience, a supportive community and the unwavering belief that life can still be beautiful.
Every young warrior learns to balance clinic visits with school, friendships and dreams that do not pause because of pain. They carry so much determination, in their laughter, their studies, their relationships and the way they keep showing up for life each day.
This space is meant to celebrates young sickle cell warriors and to create room for them to be seen, understood and to keep becoming who they are meant to be.
Sickle cell disease is a condition that affects the red blood cells, the tiny carriers of oxygen in your body.
Instead of being smooth and round, the cells take on a “sickle” or banana shape. Because of their shape, some of them get stuck in small blood vessels, slowing or blocking blood flow. This can cause sudden pain episodes, fatigue, swelling or even damage to vital organs like the spleen or kidneys. The misshapen cells also break down faster than normal ones, which can lead to anaemia (that feeling of constant fatigue or dizziness many warriors describe)
Sickle cell is inherited, meaning it is passed down from both parents through genes. It is not contagious and it is not caused by lifestyle or diet. Knowing your sickle cell status early is important both for health management and future family planning.
Most young sickle cell warriors learn, over time, how to manage pain, stay hydrated, eat well and avoid triggers like extreme cold, dehydration or stress. With regular clinic visits, preventive medication and vaccinations, they can live healthy and fulfilling lives.
This is not medical advice. If you or your child need clinical help, please talk to a trusted health worker
Sickle cell warriors face unique challenges in their everyday life. These include:
- Pain crises that come on suddenly and disrupt school or social life
- Fatigue and limits on physical activity that affect confidence
- Stigma and misunderstanding from peers and sometimes from teachers
- Gaps in information about nutrition, mental health and how to prevent complications
- Difficulty accessing consistent care and medications in some areas
None of these challenges define them, they simply show us where more care, more information and more understanding can make all the difference.
We center adolescents in everything we do. Our work focuses on three things:
- Creating safe spaces where warriors can share their stories, ask questions and feel heard
- Training sickle cell warriors to understand their bodies, take part in decisions about their care and make plans for school and work, among other
- Conducting research in our sickle cell clinic that will help in creating policies around Sickle Cell Disease in support of young sickle cell warriors
We listen first, then we design programs with young people, for young people.
The clinic is a youth-friendly place that links adolescents to basic clinical care and supportive services. It is run in partnership with local health providers and offers:
- Information about disease management and how to identify warning signs that need urgent care
- Help with routine health checks and referrals to specialist care when needed
- Guidance on nutrition, hydration and lifestyle choices that reduce complications
- Vaccination information and referrals to youth-friendly immunisation services
- Psychosocial support and referrals to counselling when teens need help with stress or anxiety
The clinic is also a place where we coordinate care, keep records safely and connect families to other community resources.
This is a tailored training package for adolescents living with sickle cell. It is designed to be short, interactive and useful in everyday life.
The training uses simple language, role plays, group discussions and practical exercises. We measure learning by asking participants what they can do differently after each session.
If you are a teen who wants to join:
Expect friendly sessions with other young people
Know that participation is confidential, and your safety and dignity are a priority
You will be invited to give anonymous feedback so we can keep improving the program
If you are a parent or caregiver:
You will be given clear information about how to support your child
We encourage family involvement in practical sessions on nutrition, medication adherence and care planning
For partners and donors
Working with us means supporting programs that combine health, education and youth leadership. Your support helps pay for clinic coordination, training materials, travel stipends for teenage participants and campaigns that reduce stigma. We welcome partnerships with health providers, schools, NGOs and funding organisations that share our commitment to adolescent wellbeing.
We are committed to listening, learning and walking alongside sickle cell warriors. If you have questions or ideas, we want to hear them.
