World Sickle Cell Day: The Disease is not a Disability, Warriors Should be Helped to Live a Normal Life 

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World Sickle Cell Day is a day set aside to create global awareness of sickle cell disease, which is a condition arising from a genetic mutation in the hemoglobin molecule.

In Kenya, it is the most common disease associated with hemoglobin. SCD is a hereditary condition and some offspring can express milder forms of the disease or simply put, they can be carriers.

The World Health Organization (WHO) reported in 2019 that up to 5% of the world’s population carrying the trait of hemoglobin disorders are passed on to offsprings by healthy patients with over 300,000 babies being born every year.

A year earlier, WHO had recorded SCD prevalence in the western counties in Kenya to be close to 4% in children with close to 20% of them being carriers. According to their published research recently, SCD has immensely contributed to the high mortality rate in children especially those below the age of 5, due to late diagnosis, lack of knowledge on the disease, and poor health care standards.

The estimated ratio of children to adult warriors is close to 3:1. This points to a ballooning number of sicklers below the age of 16 implying that the most affected category is the children.

There is a need for awareness to champion the needs of these individuals so that they can live to tell a story.

The peak feature of the sickle cell condition is the ‘crisis’ which is painful, well, very painful, and may occur in a single or multiple organs. With a huge number of sicklers being students as per the estimates, it is common that their education is interrupted sometimes for as long a month as it takes time to recover from a crisis.

Learning institutions are encouraged to understand the need for maintaining high standards of hygiene especially clean drinking water since oral hydration is a preventive measure for management of the crisis.

People with SCD are also discouraged from doing strenuous exercise that could dehydrate them as this could cause a crisis.

Infections are the leading causes of a crisis and it is vital that they are treated to avoid recurrent crises. Other causes include but not limited to; anxiety, stress, cold weather, a lower HB (Haemoglobin level), low oxygen concentration, pregnancy, alcohol, and smoking.

Considering that the condition is chronic and the economic cost involved, we appeal to employers to be considerate of sickle cell conditions. The government should subsidize the cost of managing sickle cell disease.

There is also a need to establish early screening and diagnosis like those in developed countries. Couples should be encouraged to go for early screening to establish any signs of being carriers to avoid siring children with the sickle cell condition.

It is also important to have easy access to paludrin which reduces the chances of Malaria infection and hydroxyurea which increases the level of hemoglobin production hence reducing the number of crises.

Recently another drug, ENDARI, has been approved by various countries to be used to minimize the number of crisis in children above the age of 5 and adults
Blood transfusion is among the most important remedies to a lower hemoglobin level.

To ensure that we have relatively lower complications arising from blood transfusion, patients with rare blood types must be matched. As of now, blood donors are increasingly being needed to help patients with sickle cell disease during this COVID19 outbreak.

Red Cross has reported lower numbers of those donating blood as the number has dropped by a whopping 80 percent. This low turnout is due to blood drive cancellations at churches and schools as countries are under lockdown.

Individuals who feel healthy and well should make an appointment to donate blood to help maintain a diverse blood supply.

A week ago, in honor of their departed hero Griffin Walubokho, Bungoma Youth Connect (BYC) organized a blood donation drive in Bungoma town. The drive was aimed at restocking the blood bank in Bungoma Teaching and Referral Hospital, whose stock had fallen short due to the impact of COVID 19 which led to the closure of the university and schools that contribute to close to 60% of the Blood bank Stock.

Griffins, who hailed from Bungoma, was the vice-chairman of people living with Sickle Cell Anemia in Kenya and succumbed to Sickle Cell disease at The Machakos Level Five Hospital while on his way to Voi, Taita Taveta County to honor an invitation to witness the opening of the first hemophilia and sickle cell clinic in Kenya.

Despite being a sickler, Griffin was an active member of the society and a people’s person who founded and led BYC as the President. Prior to his demise, he was working as a volunteer at the office of the First lady Bungoma- Carolyne Wangamatis office.

In honor of Griffins, the Bungoma county government administration led by Governor Wycliffe Wangamati promised to construct the second hemophilia and sickle cell clinic to take care of over 5,000 people living with bleeding disorders in Bungoma.

With that said, sickle cell anemia is not a disability. Warriors should in no way be treated as weaklings or handled with kid gloves. Let our warriors lead normal lives.

Today, Friday, 19th, June 2020 marks the World Sickle Cell Disease Day, the first lady Bungoma county will be among the panelist at a webinar conference meeting to mark the day.

 

(Seth Wanyama is a writer with great interests in politics, governance, and trending topics that affect the public. Email him sethwanyama@gmail.com)

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