Families Share Powerful Stories of Living With Sickle Cell Disease in Kenya

By Melisa Mong'ina - It all began as a routine postnatal clinic visit, six weeks after birth, at Mama Lucy Hospital.

When nurses started staring suspiciously and instructed her to proceed with the clinic visit without explanation, Beatrice Opany sensed it wasn’t a normal vaccination visit. She had no idea her life was about to change soon consumed by hospital runs and sleepless nights.

Beatrice, a caregiver and health advocate, was queuing like any other mother, waiting for her baby’s turn. Her child appeared perfectly healthy; she hadn’t noticed any signs of illness. But then, a nurse who had been watching her for some time approached.

She led Beatrice into a room, where her baby received a vaccination. But it didn’t stop there Beatrice was handed a lab request form and instructed to take her child for tests. Confused and anxious, she complied.

“It all began at our first clinic visit, six weeks after birth at Mama Lucy. I was in line like any other mother when two nurses kept staring at me. One came over, asked odd questions, then led me to a room where my son was vaccinated. She handed me a lab form and told me to go for tests. I was confused, but I followed instructions,” she recalls.

With the lab machines at Mama Lucy out of service, Beatrice had to take her baby to Kenyatta National Hospital (KNH), a facility she had never visited and where she felt completely disoriented.

Despite the confusion, she managed to get the tests done. The results showed that her baby had jaundice his eyes were yellow and his haemoglobin level was dangerously low at 3. He was immediately admitted, hydrated, and given a blood transfusion.

“The machine at Mama Lucy wasn’t working, so I was sent to Kenyatta. I’d never been there and didn’t know where to start. But I struggled through, got the test done, and brought the results back. I was then sent to Room 22 at KNH, where they explained my son had jaundice and an HB level of 3. We were admitted immediately,” she continues.

At just six weeks old, her baby underwent phototherapy for jaundice marking the start of a long and difficult journey.

At first, there were no signs of sickle cell disease (SCD). But by four months, Beatrice began noticing swelling in his thumb and feet, along with prolonged, intense crying spells.

Doctors suspected sickle cell disease but couldn’t confirm it until he was six months old, when an HbA electrophoresis test could be done. The results confirmed it her son had SCD.

“They did phototherapy and our first transfusion at six weeks. By four months, he had swelling in the thumb and feet and cried nonstop for hours. We returned to the hospital, and they suspected sickle cell but couldn’t confirm it until he was six months old. At six months, the HbA test was done, and it was confirmed my son had sickle cell,” she shares.

Since the diagnosis, Beatrice has faced overwhelming challenges for over 11 years frequent hospitalizations, a limited income, the cost of a strict diet, and countless sleepless nights especially during painful night-time crises.

“There have been so many challenges along the way, especially for a caregiver. Frequent hospital visits and admissions have been hard. Sometimes it was difficult to even get medication. Being employed is tough because you’re always in the hospital for weeks. Affording the healthy meals needed was another hurdle. And the sleepless nights... the crises mostly happen at night,” she laments.

Eventually, Beatrice joined the Sickle Cell Uhuru Trust, a support group that became a turning point for her family. It helped her and her husband come to terms with their son’s condition and broke the cycle of denial. She connected with other caregivers and patients, drawing strength and hope from shared experiences.

“After the diagnosis, I joined a support group called Sickle Cell Uhuru Trust. Through it, I learned to accept the condition and my child because healing starts with acceptance. I got encouraged seeing warriors who are 20, 30 years old, and caregivers who fully embraced their children. I also gained the right knowledge on how to care for a child with SCD,” she explains.

Her personal experience led her to become a health advocate not just for sickle cell, but for other non-communicable diseases (NCDs). Her goal: to prevent other parents from suffering the same trauma due to misinformation and lack of awareness.

“I was motivated by my personal experience. I wouldn’t wish for any parent to go through the same stress and struggle I did, trying to understand how to manage a child with sickle cell disease. All I knew at first were myths and misconceptions. I didn’t have the right information,” she adds.

Spreading Awareness and Correcting Misinformation

Beatrice now actively educates others, especially in hospital wards, where she shares her story with parents and caregivers of newly diagnosed children. In many cases, she has helped others find strength in their darkest moments.

“I believe having the right knowledge about any condition especially NCDs can help you support a friend, neighbor, or family member. I mostly advocate in hospitals, especially in wards. I encourage parents by sharing my journey. I remember one parent referred another to me her child had just been diagnosed, and she was about to give up. I encouraged her, and now she’s doing okay with her baby,” she says joyfully.

She also recalls a painful moment when her daughter, a high school student, was emotionally shaken after a teacher claimed that sickle cell patients don’t live beyond 18.

“My daughter was shaken when her biology teacher said that sickle cell patients don’t live past 18. It really affected her mentally and academically. I had to show her real-life warriors who had lived longer just to reassure her. To this day, she counts back her brother’s years every time he celebrates his birthday,” Beatrice says.

This misinformation caused emotional distress and conflict. Beatrice urges educators to be mindful and sensitive when discussing health conditions.

“I urge teachers to be mindful when teaching or commenting on conditions like SCD. Someone in class could be living with itor know someone who is and careless words can cause deep harm,” she emphasizes.

She also encourages couples raising children with sickle cell to remain united and supportive, and condemns the stigma that places blame especially on mothers.

“Sickle cell comes with a lot of stigma and discrimination, especially from those around you. There’s often blame between couples, which can lead to separation. Most parents I’ve met raising sickle cell warriors are single mothers. To partners: let’s support and encourage each other to make this journey lighter,” Beatrice urges.

A Father’s Resilient Journey: Pius Muga

The moment his daughter’s screams pierced the night, Pius Muga knew it wasn’t just a fever. He never imagined his life would soon revolve around hospitals in a desperate effort to ensure his daughter received proper treatment.

Pius, a 52-year-old father of five girls, recalls how his fourth daughter was diagnosed with sickle cell anemia in 2022. Her symptoms began with high fevers, joint pain, and persistent headaches.

A worried father caring for his children at the hospital 

Initially, doctors misdiagnosed her with pneumonia. The medication didn’t help her condition worsened.

“She kept experiencing pain, and whenever we took her to the hospital, doctors couldn’t identify the problem. At one point, she was misdiagnosed with pneumonia at Mbagathi. The medicine didn’t help, and her condition got worse,” he shares.

They were referred to Kenyatta National Hospital (KNH), where tests still showed no signs of SCD. After a year of medications and uncertainty, they sought another opinion at Coptic Hospital but again, there was no diagnosis. Six months later, she suffered a painful crisis and was rushed back to KNH, where sickle cell anemia was finally confirmed.

“We were referred to Kenyatta, where they did many tests but still couldn’t determine if it was sickle cell anemia. A year later, after another crisis, they confirmed it,” he explains.

The hospital prescribed hydroxyurea and folic acid, and advised monthly check-ups. But finances became a major challenge, especially with the high cost of hydroxyurea.

“It hasn’t been easy. Sometimes we can’t afford the prescribed medicine, especially hydroxyurea, which is quite expensive,” he laments.

Pius emphasizes that couples must stay united through the struggle of caring for a child with sickle cell.

“The best advice I can give to families is to stay united. Leaving all the responsibility to one parent is very challenging,” he says.

He also calls on the government to subsidize essential drugs for sickle cell patients.

“To our government I urge you to address the struggles of people with sickle cell. Please reduce the cost of essential medicines. Many families are suffering,” he urges.

Pius, like Beatrice, wants to correct the harmful myths surrounding SCD.

“Sickle cell anemia isn’t witchcraft. That’s just a myth. It’s a medical condition. During a crisis, the child may have high fever and severe pain. Don’t rely on Panadol rush to the nearest hospital,” he stresses.

Expert Insight: Understanding Genetics and Dispelling Myths

During a pre–Sickle Cell Awareness Day webinar hosted by NCDAK County Chapters, Dr. Alex Gachoya, Program Coordinator of the SCD Afya Dhabiti Program at AMPATH Hematology, addressed common myths surrounding the disease.

“Sickle cell disease is one of the most misunderstood conditions. Many believe it’s caused by witchcraft. Without proper knowledge, people fall into these myths,” he stated.

Dr. Alex Gachoya, Program Coordinator SCD Afya Dhabiti Program, AMPATH Hematology

Dr. Gachoya clarified that sickle cell is a genetic disorder inherited from both parents. He emphasized that mothers should not be blamed, as the child’s condition depends on genetics from both parents.

“When two partners with the sickle cell trait conceive, there’s a 25% chance their child will have the disease,” he explained.

He also highlighted that hydroxyurea is a mainline treatment, especially during crises.

“During conception, you can’t control the genes you inherit. That’s why understanding genetics is vital, especially for young women approaching reproductive age,” he added.

Dr. Gachoya debunked another myth: that people living with SCD shouldn’t have children. He explained that for a child to have the disease, both parents must pass on the sickle cell gene (S). A partner may seem healthy but still be a carrier.

“A person with genotype SS who has children with someone who is AA will only produce children who are carriers (AS). They won’t have the disease but can pass on the gene,” he clarified.

When one partner is AS and the other is AA, there's a 50% chance of having a carrier child (AS) and 50% chance of a child with normal genotype (AA).

He concluded by calling for greater awareness about genotype testing:

“People must know their status. It empowers them to make informed decisions about marriage and children,” he emphasized.