Bridging knowledge gap on sickle cell anaemia in Nigeria

“I am a victim of it and knowing what my family went through as result of this – the sleepless nights, constant visits to hospital and the long admissions – I started researching into the disease.

I discovered I had a part to play in creating awareness and helping in its prevention and eradication,” 45-year-old Mr. Ugochukwu Gabriel Ejidik told The Guardian.

Ejidike who has been living well with sickle cell anaemia is a pastor and medical laboratory scientist.

He is presently the Principal Medical Laboratory Scientist with Nnamdi Azikiwe University Teaching Hospital Nnewi, Anambra State.

Ejidike is the author of “Unveiling Sickle Cell Anaemia: Cause, Effect, Treatment and Management” and the Chief Executive Officer (CEO) of a Non Governmental Organisation (NGO), Initiative For the Prevention and Cure of Sickle Cell Anaemia (IFPCSCA).

“Couples should not sacrifice on the altar of love the comfort of their family and children spending hard – earned money at the hospital as well as the trauma that follows witnessing one’s child reeling out in pains and eventually dying,” he said.

The medical laboratory scientist added: “In this book, I have made a modest attempt to bridge a critical gap – the knowledge gap.

Many there are today who are not aware of the disease and many too who don’t even know their genotype.

Another group may know their genotype but may not be sufficiently aware of the implications.

Some may be carried away by their love (or lust) and thereby make very disastrous choices with dire consequences for themselves and their offspring.

“This book is a must read for all irrespective of one’s genotype. The knowledge gained from it will definitely be of help to someone somewhere at a definite point in time.

It is written in simple – to – understand language. Many medical terms are also explained.

I have just succeeded in raising awareness about the basic issues of sickle cell disease – its inheritance, the various types of crises, complications / organ involvement, effect on sexual development, fertility, pregnancy as well as its treatment and management.

I have also made some recommendations. I highly recommend this book for everybody – young and old.

It is my prayer that this book will achieve the purpose for which he has written it – ‘creating awareness and helping in its prevention and eradication’.”

Consultant/Senior Lecturer, Department of Haematology and Blood Transfusion, College of Medicine, Lagos University Hospital (LUTH), Idi-Araba, Dr. Adeyemo Titilope, said Sickle Cell Disease (SCD) is an ailment where people have abnormality of blood cells and because of these abnormalities, it make the blood to have a short life span which implies that they survive by being given blood.

Titilope explained that people who have SCD are dependent on blood transfusion to stay alive and to stay well.

“People with SCD are one of the indications of blood transfusion; we have some that needs transfusion every month so stay alive,” she said.

She added: “SCD is a very common disease in this environment, especially in the African continent that is why World Health Organisation (WHO) has set aside June 19, to celebrate sickle cell day, to raise awareness about the condition.

Because it is a common disease a lot of have the disease and they need our support.”

Titilope stated that SCD is a genetic disease, which makes it is a lifelong disease.

“The challenges are numerous, starting from the time they were born. They start to manifest complications of the disease.

In this environment, we do not identify them till they have complications of the disease, unlike other part of the world where every newborn are screened and those with SCD are identified,” she said.

The haematologist encouraged newborn born screening to avoid complications.

“We are not yet there yet, so what we are still doing in this environment is that when complications start to come, they are identified and being managed.

Most of these complications cannot be reversed but can be managed.”

The consultant stressed on the high cost of managing SCD, “This is expensive, and it gives them a lot of pain. It costs them a lot of money.

We need to identify SCD in new born screening as soon as they are born so as to manage to avoid complications but we are not yet there.

What we are doing is that when the complications start to come they will be identified and are now being managed,” she said.

The Consultant haematologist continued: “Some of the drugs they use are very expensive, we have a challenge of making sure that our patients are compliant to the drug and again there is need for blood transfusion.

The blood is not there and it is even difficult for them to pay for the service charge.

Again, lack of health insurance hinders management of SCD because many do out of pocket spending to manage the ailment.”

Titilope urged the government to strengthen the National Health Insurance Scjeme (NHIS) and lead the awareness campaign on the scourge and also find a way to make the drugs readily available and at an affordable price.