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Sun, Nov

Explainer: Managing sickle cell disease

Sickle warrior Sharon Awuor Odhiambo. Photo/LM

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By Diana Alivitsa Jumba

Sharon Awuor Odhiambo is a sickle cell advocate, warrior and champion.

The development strategist, a native of Homabay but currently a resident of Kisumu, has lived with the disease for her entire 30 years; with health, financial and emotional challenges sometimes taking a toll on her.

However, Sharon remains resilient and determined, emphasising the importance of managing the disease through medication, nutrition and hydration.

She underscores the necessity of bone marrow transplants for potential cure, while expressing concerns about the lack of access to basic medications for chronic diseases in Kenya, especially for those with limited financial resources.  

“The healthcare system in Kenya for chronic diseases especially sickle cell is not very good, because even the basic medication that these people are supposed to be given in hospital, they are not able to get considering the people who live below the dollar level are not able to access these medications and treatment,” she said.

Sharon called on both the national and county government to improve the healthcare system, so as to ensure access to medication regardless of one’s financial status.

She advocated for genetic testing to prevent the spread of sickle cell. Similarly, she urged individuals to prioritise compatibility before marriage to avoid cases of the disease in future generations.

Encouraging those living with sickle cell, she emphasised that it is not a death sentence, urging them to embrace self-acceptance and self-love.

Sharon added, “People need more knowledge, awareness and support because many warriors get stigmatised every day.”

Her sentiments are echoed by Michelle Nabalayo, another warrior. Nabalaya is a student at the University of Eastern Africa Baraton.

She says she manages the disease through hydration – taking more water than normal.

“I want people to understand that sickle cell is a serious disease so that more awareness can be created,” she added, calling for the reduction in prices of folic and hydroxyurea, which are used in managing the disease.

Exit the two warriors and the question begs, “What really do you know about sickle cell disease?”

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Dr. Damacline Abuya during the interview. Photo/AJ

According to Dr. Damacline Abuya, resident medical officer at the Jeremic Baraton hospital, it is a condition that affects the shape of red blood cells.

“In medical terms, we call it hemoglobinopathy because it is a condition that affects red blood cells. People are said to have sickle cell disease when they have a gene mutation in their haemoglobin which is a protein that carries oxygen in the blood,” stated the expert.

“Haemoglobin is an oxygen carrier in the red blood cells. It aids in the distribution of oxygen to the tissues,” adds Amy Ogot, a lecturer at the University of Eastern Africa Baraton.

When someone inherits a pair of genes of haemoglobin from both parents, they get sickle cell disease.

In other instances, a person can inherit one sickle cell gene from one parent and a normal haemoglobin gene that is haemoglobin A, from the other parent. When that happens, it is referred to as a cell trait.

This individual will experience only severe symptoms when one is exposed to certain conditions like oxygen tension, reduction in atmospheric pressure and low acidity.

“It is called sickle cell disease because there is a change in the shape. Blood cells are disc shaped but in patients with sickle cell disease, their blood cells are sickle shaped, so it makes it difficult for them to traverse the blood vessels,” said Dr. Abuya.

As one of the disease management measures, an individual with sickle cell should always avoid dehydration, carbonated drinks and cold temperatures.

They should also, at all costs, prevent malaria, viral and bacterial infections. Some of the lifestyle changes recommended for people with the condition are a balanced diet, getting hydrated, keeping warm, use of mosquito nets and prevention of infections.

During a painful and hemolytic crisis, a lot of  red blood cells get destroyed. In order to replace them, one will need blood transfusion, which in turn increases the chances of survival and reduces sickle cells in the body.

The treatment used over time is hydroxyurea. And since it is a genetic disease, there is no known cure. 

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