Nigerian Sickle Cell Awareness Association

Mrs. Chinyere Onyioha-Nwankwo (RN)

President

Nigerian Sickle Cell Awareness Association

Chinyere is a health care professional
who knows first hand how devestating Sickle Cell decease is to people stricken by this illness.

IN MEMORIAM

Emeka K. Onyioha
Founder

Nigerian Sickle Cell Awareness Association, who joined our ancestors from Sickle Cell Anemia on February 13, 2001.

IN MEMORIAM

Ozuo Onyioha
who joined our ancestors in 1996 from Sickle Cell Anemia.

REGISTERED IN ABIA STATE, NIGERIA -  JUNE 3, 1997

REGISTRATION #00132

Introduction

It is now a known fact that human existence is really subject to the forces of nature. However, through the course of human history, humanity has labored so much to master these forces of nature and bring them to submission. To some extent, this has been achieved with the aid of the remarkable progress made in science and technology.

But the situation may not be quite the same in most countries of the world where the progress of science is moving at a very slow pace. Consequently, most natural and human ills seem to be prevalent in those nations. Outstanding amongst these ills are diseases, most of which are chronic and are thus begging for sophisticated medical science attention, which unfortunately an underdeveloped environment cannot afford. This is the case with Sickle Cell disease, a disease which has devastated and left many families in misery and has left the death toll rising at a phenomenal rate.

The nature of Sickle Cell Anemia

Sickle cell disease is predominantly found among African and the generality of the Black race. The disease is a genetic blood disorder that deforms the red blood cells of its victims, causing these cells to take up sickle shapes. A person afflicted with this disease experience a great loss of blood or anemia and as a result has a low percentage of hemoglobin than normal. This condition is brought about by the fact that the sickle shaped red blood cells In the victim's body does not live as long as the normal red blood cells, Under these circumstances therefore, anemia sets in as the bone marrow cannot manufacture red blood cells faster than normal in order to keep up with the rapid breakdown of the sickle shaped cells.

Under certain conditions for instance, low oxygen levels, very high or low temperature levels, malaria infection and exhaustive condition after very strenuous activities, there can be an increased rate and degree of sickle cells in the blood.

And when too many cells are taking up sickle shapes the obvious implications is that there would be an increased condition of anemia. This particular development known as sickle cell crisis takes up various forms, which in each case can subject a patient to too much physical misery. Being a genetic disease, the cure for sickle cell disease has proved difficult to be found by orthodox medicine. However, the hope of seeing that the disease is completely eradicated, can only be realized through the adoption and application of preventive measures. This therefore means a perfect knowledge of one's genotype and that of his or her intending spouse, and what would be the possible outcome in their child or children of the combination of their genotypes.

Thus, whichever combination would lead to the production of a sickle cell afflicted child is discouraged and in this way sickle cell disease is prevented. But unfortunately, a great proportion of people, especially in the rural area of Africa, with a particular reference to Nigeria, are still in the dark concerning what genotype is and the importance of its knowledge. Besides this, the nature of the disease, in fact everything about it, are still shrouded in ignorance, mystery and misguided speculations.

The mortal and socio-psychological consequences of this ignorance have been quite devastating to sickle cell victims. In particular and to the society at large, available statistics have shown that of an estimate of 45,000 babies born annually in Nigeria, between two and three percent are afflicted with this disease while between 25% and 30% are born with sickle cell trait. On the whole, it is estimated that a total of 37 million Nigerians, both children and adults suffer from sickle cell anemia. With this number of people being affected and coupled with the fact that the country is dominated by many squalid rural areas, the death toll would be quite within the range of one's imagination.

Psychological perspective: - the misery has been equally great because individuals with sickle cell disease have always been regarded as weaklings, who never do well, and under-achievers. Consequently, in addition to the excruciating physical pain occasioned by sickle cell crises, which an affected individual experiences, he or she is often forced to pass through bouts of psychological depression. They have in most cases been screened out during employment sessions and denied of their rightful positions in the society, thus seeing their noble dreams crushed right before them by inconsiderate decisions made by their fellow mortal humans.

Nigerian Sickle Cell Awareness Association

Sickle cell afflicted individuals are humans and as a result they make up the generality of mankind. It follows therefore that efforts made to look into the prevention, Control, Research and Management cases and assist them in their predicament would not only improve the health and social conditions of its victims but also ultimately lead to the enlistment of humanity in the crusade for total eradication of sickle cell disease. Against this background an association known as NIGERIAN SICKLE CELL AWARENESS ASSOCIATION was formally inaugurated in 1992 in Umuahia, Abia State of Nigeria by the Godian religion. The nucleus of the association at this time consists of some medical doctors and many sickle cell patients.

Aims and Objectives

The main objectives of this association are: -

(a) To promote and to protect the material, mental and social welfare of sickle cell disease afflicted individuals.

(b) To educate and enlighten the public on sickle cell disease in its entire ramification; its signs and symptoms, ways of contracting it and the ways by which it can be prevented.

(c) To promote, encourage and undertake organized research aimed at providing more insight into sickle cell disease and hence preventing its occurrence.

(d) To check the birth, death rates of SCD victims.

(e) To enhance human development particularly in the area of education, medication and integration (employment).


Strategies

To achieve the above-defined objectives, the following strategies are to be employed:

(a) Making grants of money, drugs, clothing available to victims of sickle cell anemia.

(b) Arranging for such persons to be visited in hospitals or their homes when in crises.

(c) Running of sickle cell clinic with the purpose of providing Medicare to sicklers at subsidized rates and counseling to both victims and intending couples.

(d) Organizing of lectures, workshops and seminars, printing of publications and the running of programs in both radio and television on sickle cell disease for the purpose of raising the awareness of the generality of public on the implications and nature of the disease.

(e) Opening a research center staffed with qualified experts in the field of pharmacology and biochemistry for the purpose of analyzing the available local herbs and roots in our environment in order to sustain the search for a cure for sickle cell disease.

(f) Getting into a sister program with organizations. This will facilitate the exchange of information, sponsorship and assistance and skill acquisition in sickle cell disease management, control, prevention and administration.


The achievement of the these objectives through the above stated strategies cannot be possible without funds. Bearing in mind that funding the association is possible through philanthropy, grants and donations, we realize that for the association to make a brilliant and sustained progress and thus achieve remarkably its basic objectives, it should not depend forever on individuals and corporate bodies financial assistance but must also provide its independent source of finance. Moreover, the ability of the association to provide such an independent source of finance will go on to prove that sicklers are not liabilities and dependents, but are rather people who are capable of taking care of themselves and even others who may be in need if the opportunity is provided.

Based on these reasoning therefore, the association is intending to embark into the following profit making ventures:

(a) Acquisition of about 3 acres of land that will be used for the following agricultural ventures: -

(I) Cash crop farming

(ii) Animal husbandry.

(b) Establishment of a pharmacy shop

(c) Provision of medical assistance in emergency situation

(d) Operation of a skills acquisition workshop


Problems

The Nigerian Sickle Cell association, since its inception and inauguration, is still at a crossroad. With the exception of the Abia State Government through the moribund Abia State Family Support Program during its inauguration, the association has received no assistance from the Federal republic of Nigeria.

Moreover, government policy statements made by the Federal Government through its Ministry of Health on the cause of either coming to the aid of people afflicted with sickle cell disease, or of eradication of the disease completely has been lukewarm despite the fact that a large percentage of Nigerian citizens are victims of this disease that is a scourge to the Black race and humanity in general.

However, it is expected that with tax-deductible donations and assistance from private individuals and philanthropists and corporations, the association will be able to overcome these teething problems and will subsequently be in the position to provide a better future for both sicklers and the totality of humanity in Africa.

Please, we seek your assistance in this worthy cause and may the blessings of Chineke, our Creator, be on you sevenfold. Ise.

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