Sickle Cell disease (SCD) patients are lamenting. The reason is lack of support from the public and the government. They feel abandoned and want people to identify with them. Two patients speak their minds to WALE ADEPOJU.
Suicidal thoughts have occurred to Wilson Michael at least once. For those who do not know him, it will be too early to judge him. He is a 200 biochemistry student at the College of Medicine, University of Lagos, and if everything goes well, he will complete his studies. But why did he think of commiting suicide?
It is because, Willy, as he is fondly called, has lived with sickle cell disorder for the past 27 years and as such has experienced a number of ‘painful’ crisis.
Another sickle cell disorder sufferer, Mr Kelvin Akpavie, on the other hand, has been battling leg ulcer; no thanks to sickle cell.
Besides, his family back home in Isoko, Delta Delta State, has been impoverished by his condition.
Akpavie could not even complete his education. He was forced to drop out of school and abandon his studies at Senior Secondary (SS) 3 .
The big question is, are SCD patients getting the support to live with the disease in Nigeria? No, said the two sufferers.
For Michael, most tales, more often than not, have ended in woes than joy. This, he said, is a cause for concern as he urged the Federal Government to do something about the problem.
According to the Sickle Cell Foundation Nigeria (SCFN), almost 300,000 children, mostly in sub-Saharan Africa, are born with sickle-cell disease yearly.
According to its chairman, Prof Olu Akinyanju, many Nigerians with the AS blood type are carriers of the sickle cell genes.
The SCFN chair described SCD, or sickle-cell anaemia (SCA) or sometimes drepanocytosis, as hereditary blood disorder, characterised by an abnormality in the oxygen-carrying haemoglobin molecule in red blood cells.
The condition, Akinyanju said, can be very serious when there is no support.
“It is worse than HIV/AIDS because most SCD patients hardly smile. This probably was because the society has left them to their fate,” he said.
The complications of SCD, he said, can be prevented to a large extent with vaccination, preventative antibiotics, blood transfusion, and the drug hydroxyurea/hydroxycarbamide.
A small proportion of patients require transplant of bone marrow cells, Akinyanju said.
Recounting his ordeal, Michael said life has been very tough for him, especially during crisis.
“When I’m having crisis, it is like hell. I always wish for death. Sometimes, I crave to end it all once and for all,” he said.
People, he said, do not know what it is like for somebody to be experiencing pain in their bones. “The pain in my bones can be so severe that I often feel like dying.”
Describing the crisis, he said: “It is like somebody axing you. The pain and tears are uncontrollable. And my bones will become so feeble to the extent that I am completely helpless.”
He said sufferers should be supported financially and morally, adding that life would be hell for them without these. SCD has affected his education, growth and life in general.
“For me, everything was upside down. My family could only do very little to help my condition because I did not come from a well-to-do family and most times getting money for treatment is a problem. This was why life was so difficult for me,” he said.
Michael said to relocate to Lagos from Warri was difficult, but a decision had to taken to save his future.
“I have been providing for my treatment and education. This is difficult because I am presently studying to become a biochemist. So, this makes me to work and study at the same time,” he said.
He said his parents did try, but were frustrated owing to poor cash flow. “One day, they told me that they were tired of everything. I was so sad but I understand their predicament,” he said.
The reason, he said, was simple: “My elder sister was also a sickle cell patient. They had to cater for her too,” he said.
He said most times, his parents would struggle to pay for his sister’s treatment until she passed away.
People, he said, discouraged his parents from spending money on his treatment since they were already broke. “They would tell them that I will not survive it. This made them resign to fate that I would die anytime soon. But, something kept saying I would make it,” he said.
He said it was during this period that he left Warri to fend himself in Lagos, stressing: “Since then, I’ve been on my own without social support. However, I always encourage myself that I am going to live. But I am still trying to put myself together as I am a bit disappointed,” he said.
Michael said he owed his continued existence to some doctors and friends, who always lend a hand during critical moments.
“If not for their regular support I could have died. I met them when I gained admission to study at CMUL. They made me who I am today,” he said.
He said he could not do what most of his friends do because he was too weak to engage in physical activities, even though he loved to be lively. “If I push harder like my friends it might result to a crisis. So, I always keep to myself,” he added.
On his lifestyle, he said: “I have never lived a normal life. When people are having fun, I am battling with crisis and pains.”
He said SCD has affected his relationship with friends and general well-being, adding: “During the Christmas or Easter, I am always miserable because I cannot go to the beach to swim or cinema to see a movie. It is either I am having some pain or taking precautions against the crisis. I always miss out in everything; some clothes that I should have worn I could not for fear of getting cold. All aspects of my life is affected.”
He said he could not eat the kind of food that he loved, especially the traditional oilly soup in Warri, because of SCD.
He said any attempt to eat it may spell doom for him as it can cause skin reaction.
“Also, I could not use some drugs prescribed by doctors, especially Tramador capsule. I always take the tablet form. Its capsule causes irritation on my skin.
He advised sickle cell patients to be themselves and ensure that they take their medication as prescribed by their doctors. They should avoid anything that can trigger crisis, especially stress, he added.
“Sickle cell patients should take food that is rich in protein, such as beans. They should also relax. The reason I experience crisis because of my heavy schedule as a worker and student,” he said.
He said he usually starts his day at 6am and ends it by 9pm, Monday through Friday, adding that it is a must do for him to become somebody in life.
Mr Akpavie said he has never felt bad for being an SCD patient.
According to him, the reasons were best known to God.
The Isoko, Delta State indegene, said his parents did their best for him before they passed away. Akpavie, who lives with his elder sister, said out of eight children, he was the only one with the condition.
He called for support from well-meaning people and the government, stressing that the financial help he was getting could not meet his medical needs.
He said: “I have leg ulcer, which I must treat regularly. There are injections that I must take. These have not been easy.”
He said his sister has been a pillar of support, adding that anytime she does not have money his treatment cannot go on.
He said he could not go back to school since the demise of his father.
“I was in Senior Secondary (SS) 3 when my father died. After his burial, there was no money for me to return to school. This is coupled with the accident which I had. These worsened the leg ulcer,” he said.
Patients, he said, should take their treatment seriously, adding that they should avoid worries and be focused.
“I know that one day it would be better than this. None of his extended family has shown any interest in assisting him. I am on my own,” he said.
Akpavie is still nursing the ambition to return to school if he could get help.
