Early signs of Sickle Cell Disorder in print

As this book on early warning signals on Sickle Cell Anaemia seeks to bridge an existing but wide knowledge gap in homes, families, medical and social circles, it is important to point out the danger and devastation of marriages with incompatible genotype combinations and underscore the need for people to understand that neither money nor science can yet cure the disorder and its complications. This is what the book is out to emphasise, while also warning against every mistake that could lead to such clinical conditions. The writer, Pastor Emmanuel Dickson Ibekwe, burning with zeal and concern for the populace, made vulnerable by ignorance and self-will sometimes, decided to follow up on an earlier book on this sensitive, but often ignored, subject matter, titled “Cruel Wounds of Sickle Cell Anaemia: a Family Experience”. He told his own story, shared his family experience and counselled various categories of people therein. This priceless service appears yet to be appreciated by many homes as the message, from all indications, needs to spread further afield, to prevent more families from falling into this pathetic and sometimes lifelong ordeal of clinical conditions caused by sickle cell disorder for which no medical relief has been found. Ibekwe adopted a different approach in writing the new book on early warning signals. A picture is worth a thousand words. If the first book on “Cruel Wounds” seems – to a reader – too voluminous and laden with prose, the new book on “Early Warning Signals” is less in volume and richer in pictorial and graphical illustrations, easy enough to grasp, with greater capacity of receptivity and retention.

With all the coloured pictorial representations, the troubling signs of sickle cell disorder are vividly and succinctly captured for ease of understanding. The author warns that, to those who have not come to terms with this condition and its potential to do damage, it is best to heed the voice of reason and run away from getting in, much less thinking of managing the consequences. An ounce of prevention is worth a pound of cure. Unfortunately, in the sickle cell disorder, the road to cure still remains long, tortuous and endless, making prevention the most assured way out. For this reason, so much emphasis has been placed on pre-marital decisions, after which the consequences could only be managed. It is important, according to Pastor Ibekwe, to take advantage of the opportunity afforded by the disclosures in this book.

Much attention is to be paid to avoiding decisions superficially made and marital plans that ignore scientific underpinning of a matrimonial union. In this new book, he warns again that they should look out very well: or, in a current Nigerian parlance, to “shine their eyes well, well.” To them, he writes: “Let good conscience guide you in that engagement or courtship, otherwise you will be the worse for it. Do not allow any person, by flattery or falsehood, bring destruction on your lovely and innocent children. Your AS plus AS partner may betray you.” Going by personal experience, he asked: “Could anything be more depressing?” You clearly have no reason to fall into this lifetime trap.

For those who, unfortunately, have got into this lifetime trap, Pastor Ibekwe expresses concern that, “We must expose their anxieties and difficulties and alienation very clearly so that the world can find a way forward into a research for a possible cure. The victims, especially children, are paying painful debts they did not owe. We should stop reinforcing the sense of hopelessness amongst the youths living with this disorder, this time. If you know the implication on the mortality rate on youths with sickle cell disorder you will marvel.” Economics of management of sickle cell anaemia makes it prohibitive for the poor. The stem cell transplantation carried out by a team of medical doctors in Nigeria recently that converted a seven years old patient from SS to AA is a very welcome development because Nigeria has the largest endemic population of sickle cell disorder. Many Nigerians have the trait while over 150,000 children are born each year with the disorder (WHO 2006). So the breakthrough that helped one out of a million is highly appreciated by all well-meaning advocates of the eradication, prevention and management of sickle cell disorder. Unfortunately the enormous potential cost in Nigeria (N2.5 to N5million) is no doubt capital-intensive.

Therefore over a quarter of a million Nigerians with this disorder need assistance. Apart from stem cell transplantation, a few other preventive steps that can reduce mortality rate can be taken. The book on Early Warning does not pretend to say everything to be known about sickle cell disorder, but proffers some ideas drawn from experience for families to properly manage the sickness. It also encourages sicklers, telling them to exercise faith in God. It goes further to highlight that it requires collective effort to provide the resources needed for the optimal maintenance of health in persons with sickle cell anaemia and to bring joy and peace into such homes.