Sickle Cell Disease: Beyond Pain – Anticipating World SCD Awareness Day 2025 in Nigeria
Sickle Cell Disease: More Than Just Pain
At Beyond the Crisis, we’re committed to helping people truly understand what it means to live with Sickle Cell Disease (SCD). It’s not just a medical condition—it’s a daily testament to strength, resilience, and often invisible struggles. As we count down to World Sickle Cell Awareness Day on June 19th, we invite you to walk with us. Let’s open our hearts, clear up the confusion, and support the voices of people living with SCD—in Nigeria and around the world.
For a deeper dive into the realities of living with SCD, consider reading my book, “Understanding the Basics of Sickle Cell”.
When You Hear “Sickle Cell,” You Think of Pain. But There’s So Much More to The Story.
Yes, pain is real. People living with SCD often experience sudden, severe pain episodes, known as Sickle Cell crisis. The pain can be so overwhelming, it makes it impossible to do anything else. But pain is only one part of the story. Sickle Cell Disease affects every part of a person’s life—not just the body, but also the mind, emotions, relationships, education, and work. It’s a complex chronic illness that goes far beyond hospital beds and medication.
The Hidden Struggles of Living with Sickle Cell
Here are some of the things people don’t often see when it comes to living with SCD:
Extreme Tiredness (Chronic Fatigue): People with Sickle Cell Disease often feel constantly exhausted. The red blood cells of people with sickle cell don’t carry oxygen well, forcing their bodies to work harder for every task. Even walking or getting dressed can feel draining. This isn’t laziness—it’s a body pushed to its limits.
Long-Term Health Problems & Organ Damage: Sickle Cell can cause serious, lasting health issues, including:
- Damage to the bones (Avascular Necrosis)
- Infections in the bones (Osteomyelitis)
- Slow growth and late puberty in children and teens
These are not just medical terms—they represent permanent challenges that affect how someone walks, grows, or even lives their day-to-day life.
Weaker Immune System & Infection Risk: SCD weakens the body’s ability to fight infections. People with Sickle Cell get sick more easily, and what’s a mild illness for one person could be severe or even life-threatening for someone with SCD. A simple cold can turn dangerous quickly. This means SCD warriors must take extra care every single day.
Emotional and Mental Stress (SCD Mental Health): Living with SCD can be emotionally draining. Constant hospital visits, missing school or work, and feeling left out or misunderstood can lead to sadness, anxiety, or depression. Many warriors feel alone, especially when others don’t truly understand their struggles. Many Sickle Cell warriors also experience hidden trauma from years of hospitalizations, discrimination, and social exclusion.
Lost Opportunities & Discrimination: Sadly, many people living with SCD are treated unfairly. Some have lost job or school opportunities just because of their health condition—not because they’re not capable, but because of assumptions made based on their genotype. This Sickle Cell discrimination is a painful reality.
Real People, Real Stories: Bringing SCD Closer to Home
Sickle Cell Disease isn’t just something we read about—it’s personal, affecting real lives every day, both here in Nigeria and across communities worldwide.
- Imagine a brilliant student whose dream of studying marine engineering was shattered—not because he wasn’t qualified, but because a medical screening for his genotype said “no.”
- Consider a dear friend lost to complications from avascular necrosis, a slow, painful battle that damaged his leg and ultimately stole his future.
- Another warrior lives with a deformed foot from osteomyelitis. Every step, a reminder of the lasting effects of this disease.
These are not rare cases. They are everyday realities for so many people living with Sickle Cell Disease.
Pain Is Just One Part of The Story.
Living with Sickle Cell means waking up every day to a new challenge. But still, warriors rise. They go to work, school, care for families, and chase dreams—all while carrying a heavy load that most people don’t see.
We don’t want pity. We want understanding for Sickle Cell.
We don’t want to be doubted. We want to be supported as SCD warriors.
We don’t want to be ignored. We want to be heard about Sickle Cell realities.
Join Us This World Sickle Cell Awareness Day (June 19th): Let’s Look Beyond the Pain.
Let’s change the narrative around Sickle Cell Disease awareness.
Let’s listen to real stories.
Let’s advocate for better care, less stigma, and equal opportunities for all Sickle Cell warriors in Nigeria and beyond.
Because life with Sickle Cell is about more than just surviving—it’s about being seen, valued, and truly supported.
