By Aghogho Uniquette Akpoyovwaire, Sickle Cell Advocate

A Childhood of Unanswered Questions

As a child, I never understood why I was different from my siblings, my friends, and everyone around me. While they played and lived carefree lives, I was in and out of the hospital—always in pain, always crying, always the reason my family had to rush to the emergency room. I didn’t know what was wrong with me. I just knew that life felt unfair.

It wasn’t until my teenage years that my parents finally broke the news to me: I had sickle cell disease. But even then, the conversation around it was hushed. In my home, sickle cell was hardly discussed, partly because of the stigma attached to it and partly because talking about it felt like a lack of faith in divine healing. So, I lived in denial, struggling to reconcile my reality with my desire to be seen as “normal.”

For context, sickle cell disease is a chronic, inherited blood disorder that causes excruciating pain, severe anemia, and life-threatening complications if not properly managed. Yet, for years, I barely acknowledged it—until everything changed in 2020.

The Turning Point

During one of my most painful crises in 2020, I reached out to some of my senior colleagues who also had sickle cell but were living full, fulfilling lives. That moment transformed my perspective. It was the first time I realized that sickle cell did not have to define or limit me. I had spent my entire life seeing it as a burden, but now, I saw it as a mission.

That realization ignited my passion for advocacy, and I founded an organization—initially known as iTOUCH AFRICA, now officially registered as Aghogho Sickle Cell Care Foundation. I often say that my advocacy is my revenge against sickle cell—for all the pain I’ve endured and for the loved ones I’ve lost to the disease. 

From Awareness to Impact

My journey began with simple awareness efforts. I started by creating educational videos on Instagram and YouTube, speaking about sickle cell and breaking the silence around it. Then, I took action on the ground:

  • I provided hydration bottles to the sickle cell club at my university.
  • I organized a campus-wide sickle cell campaign, reaching hundreds of students.
  • I took my advocacy to six schools across three Nigerian states, educating young people on sickle cell prevention and management.
  • I built a team and network of over 40 volunteers, passionate about driving change.

Then, I went even bigger. I organized a sickle cell awareness event for over 400 young people at a critical stage in making marital and reproductive decisions—providing them with free genotype testing to help them make informed choices.

In 2024, we took a major step forward:
  • We officially registered the foundation with the government.
  • We secured our first major sponsor, expanding our reach and resources.
  • We launched Project Voices for Sickle Cell, training 80 young advocates from 8 Nigerian states to spread awareness in their local communities.
  • Through these advocates, we reached over 7,000 students, increasing their knowledge about sickle cell by 98%.
Turning Pain into Purpose

Looking back at my change-making journey, I see it as the ultimate transformation—turning pain into purpose. What once felt like a life sentence has become my driving force, pushing me to ensure that no child grows up feeling as lost and helpless as I once did.

But the journey isn’t over. My vision is a sickle cell-free future, where every individual has access to the right information, proper care, and a supportive community. Through innovation, education, and advocacy, I am committed to making that vision a reality.

Sickle cell may have been my struggle, but today, it is my power. And I refuse to be silent.