Three brave sickle cell warriors talk about living with the condition

Marie Ojiambo is the epitome of beauty and brains. She was crowned Miss Kenya USA in 2013 and The People’s Princess Miss Africa USA two years ago and is also a doctor. PHOTO| COURTESY NEXT LVL 

In Summary

• She represents the ever-growing number of Kenyans being diagnosed with the sickle cell disease.
• This being her 28th year since she was diagnosed as having the disease, her life has been characterised by frequent visits to hospitals, as well as taking medicine regularly.

By PAULINE ONGAJI
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Marie Ojiambo is the epitome of beauty and brains. She was crowned Miss Kenya USA in 2013 and The People’s Princess Miss Africa USA two years ago and is also a doctor. She is currently pursuing her masters in Industrial pharmacy at the St. John's University in US.

She has a near-perfect life that many are bound to regard with envy, but beneath all this, Marie is literally fighting the battle of her life.

She represents the ever-growing number of Kenyans being diagnosed with the sickle cell disease.

This being her 28th year since she was diagnosed as having the disease, her life has been characterised by frequent visits to hospitals, as well as taking medicine regularly.

But that, she says, is just part of her life and shouldn’t be used to define her as a person. Instead of making her feel sorry for herself, this condition has given her a platform to spread the word about the disease that is yet to be given the attention it deserves, not just in Kenya but also in the world.

“In my first year in New York, I fell sick and was rushed to the hospital, but I was surprised to find out that the medics there also had little information about the disease.”

This incident pushed her to do something about it, and in no time she had already started the Sickle Strong Initiative, a platform through which sufferers of this disease are able to get the much needed financial assistance through identified sponsors.

“Through this initiative, we are able to identify a sponsor who offers to cater for the drug expenses of a certain patient for a month in order to reduce the burden on the victim,” she explains.

35 YEARS AND STILL GOING STRONG

It is the same battle that Godffrey Olali, a corporate communication & marketing officer at the Geothermal Development Company, has been fighting for the past 35 years.

“My condition is known as sickle cell disease (SCD) and I am told it is deadly. It causes severe joint pains, including acute chest syndrome, high fever and shortness of breath, a fact that means I have to always keep in touch with the doctors,” he says.

His daily routine includes taking folic acid tablets, responsible for increasing the amount of red blood cells in the blood, as well as frequent use of antibiotics and even on occasion getting blood transfusions.

It is a fact that has led tofrequent admissions to hospitals, with the last case being barely a month ago.

“In 2009 I was also admitted to the Agha Khan Hospital in Nairobi where I spent 22 days,” he adds.

But despite this challenge, like Marie, Olali says life has to go on. Perhaps it is this go-getter attitude that made him the best student in Kiswahili and English in his home division of Rarieda when he sat for his KCPE exams 24 years ago.

It is the same spirit that has enabled him to lead a “normal” life, being a husband and a father of three.

He is also pursuing his PhD in communication, with his main aim being using his education and skills to educate the society about this condition.

According to Dr Jessie Githanga, a haematologist at the University of Nairobi, the Kenyan public has limited information about sickle cell disease, a fact that makes it difficult for some to realise that they are ailing.

FINDING THE RIGHT DIAGNOSIS

For Dennis Awich, an auditor with Bureau Veritas in Nairobi, it took his parents quite some time before getting the right diagnosis.

“They used to take me to various hospitals, and as always, I would end up being diagnosed with malaria or any other common illnesses,” he says.

But the grim reality dawned on them when he was only a year old, after it was confirmed that indeed he was suffering from the disease. At first, he says, his parents were confused as information about the condition was not easily available.

For this 27-year-old, he has been forced to live with the reality of struggling to save money to buy his medication. For instance, he has to take three hydroxyurea capsules daily, with each one costing him Sh25.

“Also last month I was admitted to a hospital and had to part with a cash amount of Sh17,000, since my health insurance doesn’t cover this condition,” he says.

However, Awich , who is the founder of Sickle Cell Anemia Foundation, an organisation that seeks to educate the society about the disease, says despite having lived with the disease for all these years, and even witnessing his own cousin succumbing to it, this is not a death sentence.

“We have made groups that help people suffering from this disease to continue with their daily activities as usual, taking campaigns to schools, where we educate other students and teachers on how to handle such cases,” he adds.

For the three, despite this condition being part of their lives, they are a testimony that everyone with sickle cell disease should strive to lift and emancipate themselves from the mental bondage that it may bring in life.