Struggles and triumphs of sickle cell advocate

For the longest time, Mitchelle Omullo dreamt of making her mark in the film industry. 

But just as she began living the dream, her life took an unexpected turn.

A five-day sick leave did not just end with her regaining her health, but losing her dream career.

Omullo is a sickle cell survivor and has been battling the condition for 30 years.

“The memory is still fresh in my mind. It is a constant reminder of the pain of living with the blood disorder in a world where we are sidelined for being 'weak and sickly'," she says.

Omullo's dream to become an actress saw her pursue a course in film, but six years after graduating, she has nothing to show for it.

“I was born 30 years ago at the Pumwani Hospital in Nairobi. I was a healthy child and in fact my mother says I was the healthiest of my three siblings,” she says.

At the age of three, her mother noticed that her eyes were turning pale. She rushed her to the Kenyatta National Hospital.

It is here that she was diagnosed with sickle cell, an inherited blood disorder which makes the red blood cells turn to a sickle shape.

“My parents informed me about my blood condition and since then, I have learnt to live with it positively,” she says.

Her childhood was beautiful although once in a while, she would be bullied by friends and classmates for being weak.

She would report the students to her teacher who would scold and punish the bullies.

In high school, Omullo had to deal with a teacher who denied her leave-out sheets when she felt unwell.

The teacher believed she was faking illness and wanted to skip classes.

“I was always frustrated and this worsened my sickle cell crisis. In Form 2, my mother transferred me to a school where one of my relatives was a teacher to ensure I was comfortable,” she says.

At Form 4, she started trying out her film script writing skills and would show them to her mother who urged her to keep going.

After graduating from high school, Omullo spent four years at home but kept on nudging her mother to enroll her in a film production college.

Despite her setbacks, her passion for arts grew. She successfully secured a place at the Africa Film and TV Talent Training Institute in 2017.

Her first job was with a film production company, but she only worked for a month.

“I saw the job advert on social media and applied. I was later invited for an interview and passed, earning myself a position of a social media manager,” she says.

Towards the end of the first month, the 31-year-old was taken ill and used seven days to recover.

When she informed her boss that she is a sickle cell warrior, her employer asked her to take her time to recover.

But on the day she resumed duty, one of her colleagues casually asked her if she had checked her email to which she said no.

Omullo rushed to her computer and upon checking her email.

She says she tried to talk to her employer but it was too late.

“They kept telling me I was doing a good job but could no longer retain me since the company was running losses," Omullo says.

No other worker except her, was sent home.

Omullo was handed her one-month salary and since then, finding a stable job has been difficult.

But she became more courageous and started telling potential employers of her condition.

"I talk about it openly because it's part of me, but it frustrates me when am judged and denied opportunities because of the condition," she says.

Her attempts to partner with friends have also been futile because many would leave her behind during field work.

Omullo says many times, she only learns about field work once the crew is done with production and ready to launch the film.

After many unsuccessful attempts of securing employment, Omullo resorted to starting her own film production company 

Victoria Youth in Film Empowerment was launched in 2021 to create awareness on sickle cell and fight stigma through film.

She also founded the West Kenya Sickle Cell Disease Support Group to bring together individuals affected by the disorder. 

"I wanted to create a safe space for people with sickle cell to be understood, supported and empowered," Omullo says.

Through the support group, she has become a powerful voice of change, speaking out against workplace discrimination and advocating for better opportunities for sickle cell survivors not just in Kisumu but across the country.

"People living with sickle cell are just as capable and hardworking as anyone else. We need jobs, we need to provide for our families, buy medicine hence we deserve to be treated fairly," she says.

Last year, two of her friends lost their jobs after revealing that they had sickle cell, a scenario all too common.

"It's unfair, people lose their livelihoods just because of their health status. We need policies that protect us from this kind of discrimination," Omullo says.

Sickle cell anemia prevalence in Kenya is estimated at 1-4.5 per cent, meaning every one to 20 children have the condition. Its trait prevalence ranges from 5-30 per cent.

Studies in Western Kenya show a high birth prevalence of sickle cell, with a high mortality rates of between 50 and 90 per cent, meaning five to nine out of every 10 affected children die before celebrating their fifth birthday.

Sickle cell is known to have originated as part of mankind’s fight against malaria many thousands of years ago.

Its in-built resistance to malaria is the reason why it is common in parts of Kenya where malaria is also common, such as the Coast and Western Kenya.

Data from Jaramogi Oginga Odinga Teaching and Referral Hospital in Kisumu says people who live with the disease suffer an average of five crises annually, each requiring at least 5 -10 days of hospitalisation.

During a past briefing in Kisumu, Omullo and other sickle cell advocates from Western Kenya urged the government to protect adult professionals living with the blood disorder from discrimination and stigma at work.

They emphasised the need for public awareness campaigns on the disease.

Sharon Jesscah, a sickle cell warrior and executive director of Peperusha Binti, an NGO creating awareness sickle cell, wants the disease declared a national problem and medicines to manage it made free.

Some of the medicines used to manage the disease are Hydroxyurea, folic acid, PEN V and Paludrin.

She is also calling for supply of consumables such as rapid testing kits and hemocoel machines used in tracking HB levels in people living with SCD.

" Too often, we are denied employment even when we're fully qualified. And if we get hired, we risk being fired once they find out about our condition," said

For Omullo, her battle with sickle cell continues, but so does her fight for inclusion and equality.

Her dream job may have been taken away, but her hope and her drive to make a difference remains stronger than ever.