Sickle-cell patients often share their challenges arising from the physical and emotional pain of the disease with concerns about what the future holds for them.
Sociologists advise that the society has the responsibility of accepting them as normal people who have the right and ability to live a normal life.
Sharing her experience, Mrs Felicia Nna, a sickle-cell patient and mother of two, recently said she had been managing the condition for more than 35 years.
She said her when she attained at the age of five years, she had begun to suffer series of health crises such as constant and severe back pain, weakness of the body and constant headache, among others.
According to her pain from sickle cell anaemia is somewhat unbearable involving screaming and restlessness.
“My health was so delicate that I always had one or more family member around. I was never left alone at home because the crisis could come at any time.
“My visit to the hospital was a constant thing as the severity of the crisis prevented my family members from administering any emergency treatment or assistance to me.
“With the help of God I was able to overcome the condition and pass the crisis stage I am now living a fairly normal life with little crisis,” Nna said.
Nna is one out of many Nigerians currently going through such physical and psychological pain and anguish such as this due to sickle-cell disease.
Explaining reasons for sufferers’ experience, Dr Arikawe Adeolu, a general medical practitioner at the Federal Staff Hospital, Jabi, Abuja, said persons with the SS genotype suffered series of crisis due to the rigidity of the S genotype.
He said health crisis occurred among sufferers when the S genotype blocked the blood vessels, preventing the red blood cells from passing through the veins.
“Because of this, blood does not flow freely to the organs of the body and the organs begin to suffer from blood deprivation while the sufferer starts to experience pain and constant health crisis,” he said.
He said that the crisis was an indication that the organs of the body were being destroyed which could result in the death of the sufferer.
“If the health crisis in an SS individual is reduced to the barest minimum, such a person has a high chance of living for a long time.
“Right from the womb, a child takes one genotype from each parent to form his or her genotype.
“If one parent has AS and the other also has AS there is a 25 per cent chance that the child will get the SS genotype, a 25 per cent chance of getting AA genotype and a 50 per cent chance of getting the AS genotype.
“There are three types of primary genes that are responsible for the type of haemoglobin that we have and they are A, C and S gene.
“This usually comes in pair which means people will always have two, therefore, the combination includes: AA, AS, SS, AC, SC and CC.
“The normal kind of gene is the A gene; the haemoglobin is formed normally and one does not encounter any health problems but for the S and C genes, there is abnormal formation of the haemoglobin,” he said.
Giving the statistics of the sufferers, Prof. Karniyus Gamaniel, the Director-General, National Institute for Pharmaceutical Research and Development, said about 2.5 to 3 per cent of Nigeria’s population was presently suffering from the sickle-cell disease.
He said that investigations by the institute also revealed that over 25 per cent of the nation’s population was carrying the sickle-cell trait.
The director-general noted that although the black population was the largest sufferer of the sickle-cell disease, Nigeria had the largest number of persons living with the condition worldwide.
He noted that the level of awareness and sensitisation which had been created on the disease did not deter many persons from causing the spread of the disease.
He noted that love and ignorance were two major hindrances which prevented the Federal Government and Civil Society Organisations (CSOs) fight to combat sickle-cell anaemia in Nigeria.
Gamaniel attributed Nigeria’s sickle-cell status to refusal of some intending and married couples with incompatible haemoglobin to stay away from each other even with the risks involved.
He said that other couples feigned ignorance and were nonchalant about their haemoglobin status and went into marriage without prior knowledge, resulting giving birth to children with the disorder.
“One of the major problems we have is that couples who are in love and know that their incompatible genotype status may lead to giving birth to a sickle cell child still go ahead with their plan to cohabit.
“This makes it difficult to tackle the disorder even though we have been making efforts over the years to bring it to an end. Everyone has been involved in advocacy and sensitisation.
“The Ministry of Health, CSOs, churches, mosques and traditional rulers counsel most intending couples; they advise them to know their partners blood group, genotype and HIV and AIDS status.
“The problem in tackling the condition is not in detecting it because the facilities are there; it is about the ignorance and nonchalant attitude of some people to it,” he said.
Gamaniel said that in spite of the challenge, the Federal Government had established six sickle cell centres in each geopolitical zone.
He observed that some of the facilities available in the centres were equipment which could detect the haemoglobin type of unborn babies.
According to him, the institute has researched and produced Niprisan, a drug that can help sufferers properly manage the condition and it is presently available in the institute.
He said that Niprisan was produced in collaboration with local traditional medicine specialists, adding that the drug increased the wellbeing of the individual significantly.
Irrespective of this, Mr Adeshina Adetunbosun, member, Sickle Cell Aid Foundation, underscored the importance of training more medical personnel in the management of sickle cell patients.
He said haematologists and other medical personnel should be trained and deployed to health facilities and sickle-cell centres set up specifically to manage sickle-cell patients.
“This is very vital because more than 200,000 children are born every year with the condition and 60 per cent of them die in infancy.
“In spite of this large number, the awareness about the disease is limited with surveys showing that more than half of the population does not know their genotype.
“A significant stride has been achieved in the management of patients living with the condition, including the use of Hydroxyurea, Niprisan, bone marrow transplants and Stem Cell research,” he said.
Adetunbosun appealed to the Federal Government to increase funding to enable more awareness creation and management of the condition.
Dr Obiageli Nnodu, the Vice Chairperson of the organisation, also called on the National Health Insurance Scheme to provide insurance cover for people with sickle cell disease.
She said this was important because the disease was a major contributor to mortality of children under five years.
Nnodu said that if persons with the condition were given insurance cover, it would enable them to access comprehensive healthcare service.
He also called for proper implementation of effective and evidence-based interventions such as newborn screening, counseling and prophylaxis for infection.
Adetunbosun advised sickle-cell patients to drink a lot of water, eat balanced diet and maintain a high level of cleanliness.
He said getting the right nutrition on a daily basis would help children with sickle cell disease reach their full growth potential.
All in all, stakeholders advise that the public must accepting the sufferers and respect them rather than discrimination.(NANFeatures)