Hope Amidst Pain: Mitchelle Omulo's Resilient fight against Sickle Cell Inspires Advocacy

By Seliphar Machoni 

In the rhythmic pulse of life, where every heartbeat tells a unique tale, we meet Mitchelle Omulo—a courageous and ambitious soul whose journey through the beats of existence unfolds a symphony of resilience and hope against the cadence of sickle cell. Her personal tale has transformed into a powerful force of change and advocacy.

In the quiet rooms of Jaramogi Oginga Odinga Hospital in Kisumu County, where the whisper of pain echoed louder than any words, I find Mitchell, seemingly hopeless, wrestling with the persistent pain that cut through her body. Her face reflects a mixture of fatigue and agony as medical professionals diligently work to alleviate her suffering during what she refers to as a crisis.

Sickle cell disease, a relentless foe, became a constant champion in her life. "It's not just physical pain; it's an emotional roller coaster," she shares in a husky voice full of pain, tears filling her eyes. 

Mitchell has been battling sickle cell for twenty eight years, enduring frequent visits to the hospital.

"I was diagnosed with sickle cell when I was three years old at Kenyatta National Hospital. Being raised by a single mother and the only one with sickle cell in a family of four, my journey with sickle cell has not been an easy one," Mitchelle recounts.

Since childhood, she has encountered uncomfortable and worrying symptoms such as swelling of the arms, feet, and stomach, as well as yellowing of the eyes. 

These challenges have extended into her life—work, family, medical, finances, and social relationships—significantly impacting her well-being.

"Sickle cell patients in the country don't have any support from the government, yet we face a lot of financial constraints. We have to buy costly drugs like hydroxyurea, which can range from Ksh 40-50 per tablet, and they are essential to managing the condition," she narrates.

Mitchelle faced stigma and discrimination in her professional life, leading her to temporarily step back from the film industry.

"I am into film making and production. That is my profession. But with my condition, it is so difficult to make people understand that I can do what other normal human beings do. The stigma I faced in my line of duty made me step down from filmmaking and production for some time to gain the courage to face the challenges," she explains.

Maintaining social relationships has also been a challenge, as anyone discovering her condition tends to disappear. 

As a hospitality student, sickle cell has affected her right hand, making it difficult to take notes during lectures.

She describes the sickle cell crisis as the worst moment of the condition, draining someone to the point of memory loss. 

"I really fear sickle cell crisis times because of the kind of pain I experience. It becomes so severe when it is not managed well. It can make one feel like she won't survive the next minute. The pain comes with memory loss, and at times, I become a stammerer. I manage the pain by taking anti-malaria every month, hydroxyurea and anti-bacteria every two months without fail," she explained. 

 A sickle cell crisis is a pain that can begin suddenly and last several hours to several days. It happens when sickled red blood cells block small blood vessels that carry blood to your bones. You might have pain in your back, knees, legs, arms, chest, or stomach.

Despite being advised to use hydroxyurea, she notes its side effects, such as darkening of the nails on both hands and toes.

Sickle cell has led to additional complications, as she was diagnosed with gallstones during a crisis in November 2022. 

"The pain was so severe that when I went to the hospital, I was diagnosed with gallstones that are supposed to be removed together with the gallbladder. This altered my diet, where I can't eat beans and vegetables like Sukuma wiki."

A dedicated advocate, Mitchelle creates sickle cell awareness through film marketing and education within the community.

 "I have dedicated my passion to creating awareness of sickle cell anemia. I do this through film. Like last year in 2022, I produced a film called 'Genotype' with the main purpose of teaching individuals the importance of understanding their sickle cell status before marriage." 

"I also founded the West Kenya Sickle Cell Support Group, bringing together sickle cell warriors to create awareness and educate the public about sickle cell, emphasizing that someone with sickle cell can live a long life," she explains.

Caroline Mabunde, the founder of DAMMKA, a non-governmental organization dedicated to caring for sickle cell patients in Kakamega County, says sickle cell patients face complications that demand attention, especially considering the vulnerable backgrounds many patients come from.

"I founded DAMMKA in 2012 to help those living with sickle cell anemia. So far, we have 155 patients and warriors whom we assist with obtaining medication, proper medical check-ups, and support to ensure they live longer. Most of these individuals come from vulnerable families, making it challenging for them to access the necessary medication," Caroline explained.

The organization started by prioritizing awareness, empowerment, and education for caregivers, effectively reducing sickle cell deaths.

"Empowering and educating caregivers and the community was the best strategy since many do not understand sickle cell anemia. Many look at sickle cell as a curse," she emphasized.

Despite making a significant impact, DAMMKA encounters financial challenges. 

Caroline shared, "Neither the county government nor the national government supports the organization. We reached out to the county government of Kakamega for finances, but nothing has been done so far, making us rely on international donors and funding."

Caroline also highlighted critical deficiencies in Kakamega County, including a blood deficit, a lack of sickle cell testing machines, and insufficient medical drugs.

"Sickle cell patients need blood often and hydroxyurea and other medications to help them manage the condition. Kakamega County has no hydroxyurea for the patients, and we source it from neighboring counties, which is expensive," she lamented.

Jessie Gathanga, a sickle cell expert, researcher, and consultant at Kenyatta National Hospital, shed light on the complications faced by those with sickle cell conditions, including stroke, gallstones, epilepsy, and ulcers.

"People with sickle cell anemia have an increased risk of infections, stroke, vision loss, blood clots, sleep problems, and kidney and liver problems. Proper treatment is recommended because they experience severe pain, including chronic pain," explained Dr. Gathanga.

Dr. Gathanga stressed the need for enhanced treatment, follow-up, and regular check-ups, emphasizing the importance of genetic counseling before marriage to understand hemoglobin status.

Caroline urged the community to be educated and advocated for neonatal screening for newborn babies to identify sickle cell status early. She debunked myths about life expectancy, stating, "People with sickle cell anemia can live long with proper care and management."

Expressing frustration with the lack of support from the government, Caroline called for inclusion in the NHIF cover for easier access to medical services. Mitchelle echoed this sentiment, urging the government to formulate policies and strategies for sickle cell anemia.

"Sickle cell anemia patients need hydroxyurea available at an affordable price in each region to manage crises and prevent deaths," Mitchelle emphasized.

Transitioning to an overview of sickle cell anemia, it affects the body's red blood cells responsible for transporting hemoglobin. 

The red blood cells 

Globally, around 8 million people suffer from this condition, with 250 million carrying the gene causing sickle cell disease. In Kenya, approximately 6,000 babies are born with sickle cell anemia each year.

Treatment includes drug therapy and surgery, with bone marrow transplantation being a significant option. However, its limited availability in African countries poses challenges for patients who may need to travel abroad.

Dr. Jessie highlighted the potential of gene therapy as a groundbreaking treatment for sickle cell disease following the UK's recent success. She emphasized its effectiveness compared to bone marrow transplants, expressing hope for its global implementation.

"I believe gene therapy would be more effective when comparing gene therapy to bone marrow transplants. Unlike bone marrow transplant, which requires checking compatibility between the donor and receiver, gene therapy focuses on correcting the abnormal gene responsible for excessive Hbs production and replacing it with a gene that produces haemoglobin A," explained Dr. Jessie