Sickle cell anaemia warriors fighting silent killer, stigma

Jean Mbayi discovered she had Sickle Cell anaemia when she was 10 years old. [Mumo Munuve, Standard]

It is now 24 years since Jean Mbayi was diagnosed with sickle cell anaemia. 

At 34, Ms Mbayi says her journey with sickle cell has been full of both losses and triumphs but one she is proud of. 

She vividly recalls the day the news was broken to her and her parents back in 2004. 

"I woke up one morning feeling weak, and I had a fever.  When my parents took me to hospital, that's when we were told I had sickle cell anaemia,” says Ms Mbayi.

At first, her parents were reluctant to accept the reality. They however embarked on a search for the best doctor to treat her.  

Ms Mbayi survives on medication, drinking plenty of water and having enough rest.  

Ma Mbayi says she had the most difficult childhood as she couldn't keep up with her peers whenever they were outside playing. Her bicycle kept her company most of the time as she spent most of her days cycling.

“My parents were very cautious, they could not allow me to play with other children because I could get tired so fast and at times I could feel frustrated.  Even though I loved cycling, I could not do it for long,” she says.

When she hit puberty, things even got worse because of the monthly period. Her body became weaker, especially during that time of the month and she was forced to keep off school most of the time.

Ms Mbayi says when she joined high school, she promised herself to she would live like any other teenager born healthy. 

"I did not have any other option but to learn to live with my condition positively and overcome challenges that come with it," she says.

Together with other Sicklers, Ms Mbayi has embarked on sensitisation project through which they educate people about the disease to end the stigma and prejudices associated with it.

Joanne Chazima, also living with sickle cell anaemia says she was diagnosed with the disease when she was 22 after developing acute chest syndrome complications.

“I was taken ill when I was at work only to be diagnosed with sickle cell anaemia. It sounded like a death sentence at first but the doctor encouraged me to remain strong and do everything he recommended,” says Ms Chazima.

Experts indicate that acute chest syndrome is one of the symptoms of sickle cell anaemia and occurs when a lung infection or sickle cells block blood vessels in the lungs.

It is a life-threatening complication, resulting in chest pain, fever, and difficulty in breathing. Periodic episodes of pain crises are also a major symptom of sickle cell anaemia according to Dr Shem Jeremia who is the chairman of Hemophilia Association and other Blood Disorder in the Western region.

He explains that pain develops when sickle-shaped red blood cells block blood flow through tiny blood vessels to the chest, abdomen, and joints. The pain varies in intensity and can last for a few hours and days.

“My stay in hospital for days posed a threat to my job. On my return, there was pressure at work that triggered more relapses. I quit and become self-employed but I could not cope with the situation, I felt exhausted most of the time,” she adds.

During hot weather, Chazima says she would feel dehydrated all the time. She also nose bled a lot and experienced joint pains during cold weather.

The condition requires her to undergo blood transfusion at times but blood shortages in local hospitals and scarcity of medicine and other pain-relieving medications, she says, are a big challenge.

In her community, sickle cell anaemia is associated with witchcraft and patients rarely come out to speak about their condition.

Dr Jeremia says the medics have begun a sensitisation drive targeting parents of children living the condition and medical practitioners first and residents.

He has petitioned the county government to support the initiative by availing some of the expensive drugs required by patients and help set up more clinics to reduce the burden on patients who incur huge expenses in search of treatment in big hospitals within and outside the Western region.

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The Standard
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