Wang’s Journey With Sickle Cell and the Medical Truths Couples Must Hear Before Saying ‘I Do’

“I’ve known nothing else but life as a ‘sickler’.” With those words, Wang Bot opened the door to a world most only see from the outside.

On Friday, June 20, the day after World Sickle Cell Awareness Day, I sat with three voices woven into Nigeria’s sickle cell story: a medical doctor, a nurse, and a survivor.

Their answers offered not just clarity but something deeper: humanity, complexity, and a call to action.

Wang Bot’s Journey

For Wang Bot, a young man living with SCD, every word carried the weight of lived experience.

“I was diagnosed as an infant, so sickle cell… I couldn’t attend school with my peers. I had no childhood friends. I was homeschooled and spent most of my time either indoors or in the hospital. My world felt isolated, and I became timid and withdrawn. My only friend was my younger brother, who also had sickle cell. Sadly, he passed away at the age of four. Losing him only deepened my loneliness. In summary, my childhood was marked by solitude and struggle.”

Wang’s life has been anything but conventional, but his maturity is unmistakable. Asked if he ever resented his parents for marrying despite being genotypically incompatible, he admitted:

“Yes, I did, especially during moments of extreme pain. It was hard not to feel anger or ask “why me?” during those times. But as I grew older and matured, I learned that my parents had no idea about genotype compatibility before they got married. It wasn’t out of negligence; they simply weren’t aware. With that understanding, the resentment gradually faded.”

It turns out that SCD didn’t just shape his childhood, it also altered his adulthood.

“I can’t handle the stress of a typical 9–5 job,” he said.

“I had to explore other paths. That’s how I found my way into the tech world. It gives me the flexibility I need to manage my health while pursuing a meaningful career.”

Wang said this was not always easy though.

He added that “sharing [his] medical condition at work can be a risk [and] sometimes, it was just easier to stay silent and try to keep up until the strain becomes visible.”

Still, he chooses hope.

“I’m grateful to have an incredible circle of friends and family who support me unconditionally. Life with sickle cell becomes much more bearable when you’re surrounded by love.”

In terms of romantic relationships, he noted he was currently single, but hopes to get married someday to someone he loves, who also loves him, and has the AA genotype.

His advice to others living with the condition was perhaps the most powerful moment of the interview:

“Live. Truly live, at every opportunity you get. Don’t let sickle cell trap you in fear or depression. That only makes things harder. As long as there’s life, there’s hope. Find the things that bring you joy, and embrace them whenever you can.”

“For me, the secret to joy and peace has been God. He gives me strength to face each day and the courage to dream in spite of the pain. So, live purposefully, find what makes you smile, and hold on to hope,” he concluded.

The Medical Truths We Often Miss

When asked if it was true that sickle cell disease (SCD) no longer poses a threat after childhood, Dr. Vincent Ajaka, a seasoned physician, didn’t mince words:

“[That belief is false]. sickle cell disease is a lifelong condition, where it neither disappears or reappear, it’s constant, it’s is a chronic condition that requires continuous management and care. Also complications can occur at any age, these complications include pain crises, infections, and organ damage, at any age. The only difference with age is that the patient learns how to manage the crisis and avoids conditions that trigger such a crisis.”

Nurse Celine Asar, a matron with years of field experience, reinforced this insight.

“…of recent, someone died from being a sickler at 35. It depends on how they take care of themselves, [so it’s not dependent on age], she said bluntly.

On the subject of genetic inheritance, both experts were unanimous:

“If both parents are AA genotype (normal hemoglobin), they cannot have a child with sickle cell disease (SS or SC) this is absolute. If one parent has the AS genotype (sickle cell trait) and the other has the AA genotype, their children can inherit the AS genotype (note…just 25% chance of AS and 75% chance of AA). They cannot have a child with SS genotypes,” Dr. Ajaka explained.

Nurse Asar reiterated this,

“there cannot be an SS with AA involved,” she said.

When asked if there are genotypes beyond the common AA, AS, and SS, Dr. Ajaka responded with a nod of affirmation.

“Yes, there are other genotypes associated with sickle cell disease, such as SC (sickle-hemoglobin C disease), Sβ-thalassemia (sickle beta-thalassemia), SD (sickle-hemoglobin D disease).”

“For marriage, individuals with SCD or sickle cell trait, will need a lot of counseling, if one partner has SCD (SS or SC) or sickle cell trait (AS), it’s important for the other partner to know their genotype to assess the risk of passing SCD to their children, which is likely.

And who should these individuals marry? Dr. Ajaka offered a cautious reply:

“We always recommend AA + AA, or at most, AS + AA. Any combination involving two carriers (AS or SS) increases the risk of passing on the disease. Counseling is essential.”

Nurse Asar called on young people to research more on the subject.

The conversations confirm what public health data try to translate: Sickle cell is a chronic, genetic condition affecting millions of Nigerians and still, too many remain unaware or ill-informed.

With over 150,000 babies born with SCD annually in Nigeria, and more than 50 million people carrying the trait, the stakes couldn’t be higher.

The message from the experts and survivor is clear: genetic testing must precede romance and love must be educated.

Let us remember Wang Bot, Dr. Ajaka, and Nurse Asar, not just for their answers, but for their courage in telling truths we often ignore.