Tackling Sickle Cell Anaemia through Advocacy, Proper Management

L-R: Executive Director, Noahs Ark for Sickle Cell Foundation, Ms Osasele Esangbedo; Chairman, SAMI Board, Mr Foluso Phillips; MD, Sickle Cell Foundation, Mrs Annette Akinsete; ED, Sickle Cell Advocacy and Mgt Initiative, Ms Toyin Adesola; Public Affairs Office, US Consulate, Russell Brooks; and ED, Crimson Bow Sickle Cell Initiative, Ms Timi Edwin, at the sickle cell round table recently

The Sickle Cell Advocacy and Management Initiative recently held a roundtable where it x-rayed the challenges and the task ahead in defeating the health challenge. Sunday Ehigiator reports

When Dolu went into sickle cell crisis on a certain night, his mother never knew it would be the last time she would see him. Having no one to turn to, she sought consultation from neighbours who gave advice that worsened the situation. By daylight, she rushed him to a hospital where the medical personnel had limited knowledge about the disorder or empathy about the situation. Unfortunately, due to their mismanagement, Dolu died. Unfortunate as it is, this scenario happens often.

The Sickle Cell Anemia Disorder (SCD) is a hereditary blood disease of the red blood cell that affects over four million Nigerians; the highest in the world. It is estimated that out of 150,000 children born annually, only about 25 per cent live to see their fifth birthday.

Experts said it is called sickle cell due to the sickle of banana shape of the red blood cell. Normal blood cells are round and soft, while those of a person with SCD are hard and have a sickle shape.

When there is not enough oxygen in the body, the blood cells get blocked, resulting in extreme bone pains commonly called crises and other complications. It commonly occurs when both parents who have the SS gene, passes it to the child. That is when both parents are AS, or SS, or when either of both is AS, and the other SS.

The lack of proper medical and affordable care, ignorance and poverty result in trauma, extreme pain, neglect, abandonment and even death amongst those with the disorder. Unfortunately, an increasing number of those affected face complications ranging from leg ulcers to avascular necrosis. When these conditions are not treated, they result in social, economic and psychological difficulties and sometimes, even death.

SAMI’s Roundtable
From the foregoing, and against the vision of having a society were SCD is reduced and people with sickle cell and their families are able to live healthy, positive and productive lives, Sickle Cell Advocacy and Management Initiative (SAMI) organised a round-table discussion.

In her welcome address, Founder, SAMI, Ms. Oluwatoyin Adesola, a sickle cell carrier who celebrated her 54th birthday recently, hinted on the need for the public to be educated about SCD management.

She said: “Having been a carrier myself who has survived several crises and been in and out of hospitals on several occasions till now that I am 54 years old, I deem it necessary to help those who may not be privileged like me to have reasonable medical attention, care and emotional support.

It is quiet unfortunate that in this society, people see SCD as a death sentence; hence they don’t bother to send such children to school or provide some luxuries for them as they consider it a waste of resources; even to the point of not spending on their treatment when they have crises. They even set a time frame of 20 years max for victims. This is so wrong. I am a living example and there are several others who has lived for over 90 years with SCD. Due to this ignorance, people living with sickle cell suffer extreme pain, sorrow, low self-esteem and stigmatisation and many lack proper and affordable medical care in a disorder that is financially and socially draining.

“When an uneducated family has to take care of not one but sometimes up to five children with SCD, they can hardly afford basic needs let alone medical needs, so there is need for a proper support system from the government. And not just government, the private sector must also wade in. Just like Guaranty Trust Bank is championing the cause for those living with Autism.”

Red Umbrella Charity
She continued, “on the part of my foundation, we have been organising the ‘Red Umbrella Charity Walk’, which is an annual event designed to create awareness about sickle cell disorder in the society, held to commemorate the June 9 world sickle cell day. It involves a partnership with the coalition of sickle cell NGO’s in Nigeria, and involves over 1000 participants from all works of life, from captains of industries, celebrities, government personnel to friends of sickle cell and people living with sickle cell with corporate organisations joining the walk, and identifying their brands with the event and cause.”

Adesola said she hopes for a situation where an organisation would solely champion the SCD cause and be known for that, adding that on her part, she hosts a sickle cell show on Eko 89.7 fm tagged ‘Touch a Cell’.
She said: “We realised that due to the societal perception of SCD carrier, a lot of them are in hiding. They do not go for proper care. But with the programme, a lot of them have become more open about it, and learnt how to better manage those living with it, and care for them.”

In his keynote address, Chairman, Philips Consulting, and Member, SAMI Board of Trustee, Mr. Foluso Philips said: “It is a disorder that has become the foremost genetic disorder worldwide, and a lot has been done; including research to see how it could be cured worldwide. Many years ago, in some parts of Nigeria; especially among Yoruba’s, we knew about the concept of ‘Abiku’; a child that is just going to die no matter what. In Igbo, it was called ‘Ogbanje’. Not until now did we realise that they may have just being suffering from SCD.
“It is an inheritable disease, genetic, fatal and all about red blood cell disorder. And yes it can lead to death. It got worldwide recognition, and suddenly, the United Nations General Assembly on the December 22, 2008, adopted the resolution to recognise the sickle cell disease as a public health problem and as ‘one of the world foremost genetic disease’, and therefore declared June 19 as world sickle cell day.

“And this is deserving because it is something that affect largely black people. Nigeria has the highest number of people living with sickle cell in the world, with over four million persons and an about 150,000 birth annually that can be avoided. If people are aware that this can be avoided and just understand that marriage isn’t just about love.

“It is fair enough to say that over the years, awareness has improved as well as the life expectancy of people with SCD which has become a lot higher, of which Adesola is a wonderful example. Thanks to research findings for curing SCD like bone-marrow transplant, sickle cell transplant, gene therapy, and discovery of using HIV envelope etc.”
He commended SAMI for creating its awareness on the scourge.

US Consulate’s Partnership
In his remarks, Public Affairs Officer, United State Consulate, Russell Brookes expressed the consulate’s delight to work with SAMI in creating awareness about SCD to the Nigerian public.

He said: “We are proud to work with such an organisation and individuals who are committed to educating and empowering fellow Nigerians. The U.S. mission has several objectives here in Nigeria including supporting a healthier population by working side-by-side with Nigerians to enhance public awareness and healthcare.

“Sickle cell disorder affects thousands of Americans; many of them, African-Americans. Unfortunately, Africa has the highest prevalence rate in the world. The problem that occur due to sickle cell can severely interfere with an individual’s education, work, psycho-social development, and basic survival. The most severe forms of the disorder can cause children to die before the age of five. Unfortunately, systematic screening is not a common practice. Routine screenings for sickle cell could save many lives and improve the quality of life for those living with the disorder.

“While no known cure exists, early detection may prevent serious complications and people living with the disorder would certainly benefit from information on how to manage this condition. In a population with a high rate of the sickle cell disorder, early detection can help Nigerian mitigate this particular obstacle to its development and prosperity.”