Kebbi State has a population of two million people, 25 per cent of whom are Sickle Cell carriers. In this report, YAHYA SARKI x-rays the disease burden and the efforts of the state government, individuals and NGOs in addressing this health emergency.
Sickle Cell Disease (SCD) is a group of inherited red blood cell disorders. It results in an abnormality in the oxygen-carrying protein, haemoglobin, found in red blood cells, and can manifest in the carrier’s body as early as five to six months old.
Early symptoms of SCD may include painful swelling of the hands and feet, fatigue and /or jaundice. Sickle cell condition largely results from a defective sickle cell gene inherited by a carrier from both parents.
Reports show that about one in every 365 black children is born with sickle cell disease. According to an NGO in Kebbi State, Kebbi Sickle Cell Association (KESCA), investigation reveals about 25 per cent of Kebbi’s population are sickle cell carriers. The blood disease subjects victims to untold hardship, pain, trauma, economic loss and even death. Survivors of the disease are deemed warriors.
A doctor working with Federal Medical Centre, Birnin Kebbi ,Garba Umar Kangiwa, who is a specialist on blood and its diseases, has the sickle cell disease as one of his areas of specialization. In an interview with LEADERSHIP Sunday, he had this to say, “Sickle cell is an inherited disorder that is inherited from the two parents. Each parent contributes one abnormal hemoglobin to the offspring.
“One of the major issues of intervention is the creation of awareness among the people. People should be aware before they get married. They should know their genotype. Anybody that carries an S gene should not marry somebody that carries an S gene.
“The government can work towards this by creating or embarking on an awareness campaign against the marriage of people who inherited the same S gene so that people are enlightened that once you carry an S gene you are likely to transmit the gene to another child.
“And if the father or parent carries the abnormal S gene so that the child will now inherit two abnormal S genes, then it becomes a sickle cell disease.
“Secondly, government should enforce pre screening marriage so that anybody getting married should present a genotype result . The consequence of the sickle cell disease can be enormous, it can affect any part of the body ,it can affect any individual and the financial burden on the family can be very enormous as well.
The“third advice is for government to create marriage counselling centres in different localities. Government should be able to create a system such that anybody getting married can go and access it free , in all our hospitals , in all our general hospitals, at least there is no local government area without a general hospital .
“Then lastly , for those that had already gotten married with it and those that have children ,government should put in place facilities capable of caring for children found to be having sickle cell disease. And for the patients that have been diagnosed with the disease, it is unfortunate because it is a life long disease .There is nothing that will reverse it quickly.
“As such , we know recently there is a new technology that will reverse the genotype that is through what we call bone marrow transplant or stem cell transplant. But it is risky and costly because it is fifty fifty percent and the quality of life despite the transplant will not be the same as the same quality of life with some who is AA.
“Some will have to live through out their lives on drugs. One to two percent of the total population of Nigeria suffer from sickle cell disease itself . So when you look at the population of Kebbi State, if you are projecting something like two million or four million people in Kebbi State you expect that ,one to two percent of four million people are actually having sickle cell disease.
“By extension the burden of sickle cell disease is enormous everywhere and the consequences of sickle cell disease really affects any part of human body, there is no part of the human body that is spared of the complication of sickle cell disease.”
On its part the Kebbi State Government says it is doing everything possible to reduce the disease as well as assist the patients of sickle cell . The Director Medical Services, Kebbi State Ministry of Health, Dr. Aminu Haliru Bunza who is also a consultant physician, dermatologist and venereologist, started by giving an insight on sickle cell disease.
“Sickle cell disease as you know, is a disease that is inherited from parents when a mother or father is AS or SS and eventually they give birth to a child with sickle cell disease. It is a blood disease that affects the hemoglobin.
“Sickle cell, as it is, is widely spread here in our area because of our nature and also because of the lack of premarital counseling and testing which encourages it.
“The Kebbi State Government has a programme for free treatment for pregnant women and children under five. Most of these children are taken care of by the system in our various hospitals. The government has even gone out of its way to sponsor over eight children that have gone through the process of hip replacement. We also sent two sisters to Ibadan who were treated and will undergo bone marrow transplant.
“So the state government is in the forefront in seeing that these patients are catered for and in addition ,Her excellency Dr.Zainab Bagudu ,the wife of the governor who is also the ambassador of Kebbi State Sickle Cell Association (KESCA) headed by Hadiza Yahaya Shantali ,the state government has always been in the forefront of all their activities.
“Infact, we have even posted to their centre a laboratory scientist being paid by the state government and thirdly the state government has also sponsored KESCA to attend conferences in Nigeria and the United Kingdom, sponsoring a hematologist ,Dr.Kangiwa from FMC Birnin Kebbi together with three others from the association. They were taken to London and Enugu to attend various conferences .
“So I can go on and on. The state government has always been in the forefront of seeing that the suffering of these patients is drastically reduced and through this office people who are victims have been assisted “ he explained.
Dr Bunza urged the well-to-do and private sectors to come in and compliment the efforts of government but stressed that awareness is to be created.
“We need to create awareness ,we want everybody to come out and do it because if people are aware this disease can be prevented .You can see these children will keep on falling sick, they need blood transfusion and the problem of a mother or a family managing a sickle cell disease patient is not easy. So what we are calling for is for people to raise awareness. We need counseling,we need to do simple genotype to know if you are AA or AS.
“One of the basic principle of this disease is preventing it to happen. We can stop people from getting it, use that avenue ,create awareness, no girl should marry without knowing her genotype,” he said.
22-year-old Zahid Umar is a sickle cell survivor. According to him, SCD manifested when he was two months old. Following the diagnosis, his parents he noted, suffered alongside him shelling finances to ensure his healthy existence. The condition has affected his education, which he forsook to focus on managing his health.
“I have had to halt my education despite being close to receiving my National Diploma at the Waziri Umaru Federal Polytechnic in Birnin Kebbi. I am unable to go to school or meet with or make new friends. I am always closeted at home in pains. Extreme climate aggravates the effects. I am extremely carefully not to catch malaria, as a single mosquito bite can trigger the disease,” the young boy stated in near tears.
Zahid, however, believes all hope is not lost, since he has managed to survive through divine intervention and the generous aid of the non-governmental organisation, KESCA.
KESCA spearheaded a hip transplant operation for Zahid. “The operation cost over a million dollars and I have no idea where the funds came from.”
With the surgery, Zahid is looking forward to resuming a normal life. And he called on the federal government to assist organisations such as KESCA determined to help those living with sickle cell disorder.
Thirty-year-old Bilkisu Umaru Zoromawa is another victim of the SCD. She may have survived but the blood condition ruined her marital bliss. Her husband, due to inability to bear the financial burden accompanying the condition divorced her.
During her pregnancy, she suffered paralysis in one leg, and experienced extreme pain leading to the death of the child during childbirth.
“I went through so much physical pain and emotional trauma. The pain limits my interaction with family, relatives, and friends. It has strained my relationship with people who don’t understand how little a control I have over my body when the pains hit, and so I had to cancel meetings abruptly.
With the NGO’s intervention, Bilkisu just like Zahid, had a hip replacement surgery that enabled her to walk again with the aid of crutches. “KESCA, through Hajiya Hadiza Yahaya Shantali, is offering invaluable service to humankind. I thank God for her and encourage government and philanthropists to support her efforts to provide succour to persons living with SCD,” appealed Bilkisu.
KESCA founder, Hajiya Shantali, an SCD survivor, said the idea to establish the organisation came 10 years ago. Its aim, she continued, is to generate public awareness of the disease, and mobilise support assistance for SCD patients in Birnin Kebbi.
A landmark opportunity for humanitarian assistance arrived in the form of the organisation sponsoring hip replacement surgeries for three victims of SCD.
Each surgery cost over a million naira. Beneficiaries include young Zahid Umar and Bilkisu Zoromawa.
Besides changing the lives of SCD patients, KESCA is providing free genotype tests to over 600 registered members across the state at its facility. It further extends outreach programmes to all the 21 local government areas of the state.
Narrating her journey to founding KESCA, Shantali stressed the journey was not without challenges and worries from increased demand for assistance from victims.
“For 10 years my husband, a pediatrician, tended to lots of patients with SCD Sadly, he observed most of them are less privileged with the parents unable to afford proper treatment.
The dilemma with the condition is that once a child with SCD develops a symptom, it leads to crisis, which includes joint pains that if neglected lead to anemia, requiring blood refill. I compare anemia to a car that needs fuel. If you know when your car needs fuel and you don’t refuel, it will automatically stop.
“When a child needs blood and you are unable to transfuse on time, his or her heart will eventually fail. This is the major cause of mortality in sickle cell disorder. So, therein lies the need for us to come together,” Shantali recounted.
“We started gradually. Today, KESCA has grown into a massive membership of over 600 registered patients. We believe it is better to ensure greater understanding of the disease first. For carriers, it is a life journey of pain that begins as early as six months till the rest of their lives”, Shinkali informed the interviewer.
Addressing the findings of her organisation’s investigation, that over 25 per cent of Kebbi’s population are SCD carriers, Shintali clarified what it meant in layman terms. “Kebbi State has a population of over 2 million, and 25 per cent of this population are living with SCD. It means they are transmitting this disorder to the next generation. Now you will understand this is a situation requiring the health ministry, government and organisations as ours to look into and increase preventive efforts since there is no cure for the SCD at the moment.
“The only cure available is in bone marrow transplant but not every patient can afford it. Majority of us will live with the disorder for the rest of our lives. Hence, the need for intervention is significant in the present scenario.”
Speaking of the organisation’s challenges Shintali pointed to inadequate finances. She said as more people register with KESCA with expectations of solutions to their situation, the tighter funding sources get.
“We have a centre in Birnin Kebbi for testing genotype. Genotype screening takes place from Monday to Friday. Recently, we received a donation of PVC machine from the CBN, used in testing patients’ blood level. SCD carriers are required to take the test on monthly basis.”
“We also test patients for malaria parasite, because malaria can trigger crises, crises that can lead to anaemia. These are the things we do at the centre, which is the only one available in the state. This we do alongside outreach programmes to the state’s LGAs on occasions as the World Sickle Cell Day.”
She said state governor, Senator Abubakar Atiku Bagudu, sponsored genotype screening in LGAs at one time, as well as study trip to UK for one of KESCA’s doctors to learn more about the disease.
She noted that with their service and that of the Federal Medical Centre, in Birnin Kebbi, people didn’t have to travel to Saudi Arabia for hip replacement surgery.
KESCA, she added, produces books and magazines detailing all one needs to know about sickle cell disorder.
In addition, the wife of the Kebbi State governor, Dr Zainab Bagudu, sponsored a surgery for an SCD patient. Meanwhile, the organisation has received anonymous support to embark on surgeries for three SCD patients. Two of the surgeries were successful while one was put on hold.
The funds were appropriated to physiotherapy treatment for a stroke-inflicted SCD patient alongside others.
“So far, we have been able to secure three successful surgeries and six medical interventions. As more members register as a result of our successes, it has become a big challenge to us.”
“At present, there are children in need of hip replacement surgeries. Living with sickle cell is a kill or be killed battle. Challenges are enormous, and I am calling on government and individuals to do more to assist SCD victims. Sickle Cell condition in Kebbi is real, something must be done to reduce the alarming rate of SCD carriers in the state,” concluded Shinkali.