OLAGBEMIGA Lawal is a sickle cell patient with HbSS. A network engineer, Lawal had challenging times for decades, with sickle cell.
On a daily basis, he was spending not less than N2,000 to buy medications, not to talk of times of crisis when he would be admitted and transfused with blood when necessary. It had been an excruciating experience until he was introduced to a non-government, not-for-profit organisation which brought succour to his life a year ago.
Sickle cell is a group of disorders that cause red blood cells to become misshapen and break down.
With sickle cell disease, an inherited group of disorders, red blood cells contort into a sickle shape. The cells die early, leaving a shortage of healthy red blood cells (sickle cell anaemia) and can block blood flow causing pain (sickle cell crisis). Though the condition can’t be cured, its treatment can help. It requires a medical diagnosis, and laboratory tests or imaging are also always required.
So, for Lawal, medical, financial and psychological challenges had been combined for him, until he met with the NGO, which was tagged Chrisbo Hb Champions Club, to refer to those with sickle cell disease as champions, not patients.
According to Lawal, “with the help of God, I met with Chrisbo Hb Champions Club about a year ago and it has been wonderful. In terms of healthcare, they have been taking care of blood donation free of charge, treating me without any payment. They have been really helpful. The experience had been terrible. It was when I met the founder, Dr Bosede Ola, that I knew that I have AVM, which means the head of my femur is getting destroyed and is common with most of the Sickle cell patients. When I met her, she introduced me to someone who can help me to manage it and we are in the process of doing the surgery.”
He said that it was not easy managing the crisis, as he was initially spending at least N2,000 to buy medications daily, “since I met Chrisbo, they have been giving me medications free. I was admitted two weeks ago and nothing was taken from me. They have been really helpful.”
Speaking with the Nigerian Tribune, Dr Ola, a medical doctor with over 30 years experience and passion for sickle cell management and founder of the NGO, said that she was inspired to establish a non-government organisation to take care of people living with the health challenge.
On how she got interested in the medical challenge of some people whom she calls champions instead of patients, the medical graduate of the then University of Ife, now Obafemi Awolowo University, said:
“I used to be in charge of the haematology daycare at State Hospital, Ring Road, in the 90s, so I’ve been taking care of patients with sickle cell for a long time. That made me see the degree of suffering and it gave me a passion for them. I have always loved helping people even from childhood. If somebody is ill and the person gets well and I am part of the process that made that person to recover, I feel fulfilled and it gives me a lot of joy. So, medicine is my passion and not just a source of income.”
Having worked with the Oyo State Hospitals Management Board and Jericho Hospital, Oyo State, Dr Ola said that she was posted to the haematology clinic under the leadership of Dr Titi Ipadeola.
“That was why I got this passion. We even had a Sickle Cell Club of Adeoyo and I was in charge of the club. We used to go around to meet corporations and the drug companies to solicit for medications to treat patients who had sickle cell free of charge. We put the money together to buy all their medications so that they would not go and queue in pharmacies,” she explained.
Becoming anesthesiologist later in addition to her medical qualification before her retirement in 2017, she decided to start the charity work in 2020, but registered it in 2014.
Dr Ola said: “What motivated me was the degree of suffering I saw among these people. There was a lot of suffering and then the cost of taking care of them. The frequency of hospitalization, buying the right food and everything. It is an expensive illness to manage. Most of them, even those who were comfortable, this illness brought them down.
“Seeing this, I couldn’t look away because that is who I am; so in my heart I do whatever I can do to reduce their suffering, to reduce their expenditure.
“When we started, we were helping them to pay for consumables and not services. When they were on admission, they didn’t pay bed fee, nursing care, consultation. They just paid for their drugs and whatever they consumed. However, the club started in 2020 after the COVID lockdown. I’m retired but I still have more strength, energy and passion. What we do now is since this is an NGO, which was named Chrisbow Hb Champions Club, we meet once in a month. On that day, anyone who comes with sickle cell will have free PCV check, free folic acid, free analgesics. We also have seminars during which we treat topics like nutrition, psychological aspect of the disease, welfare and wellness, among others, to improve the quality of their lives.
“We are celebrating our first anniversary on Saturday December 11.”
She noted that many of those with sickle cell disease are indigent and are unable to manage crisis when it occurs, which formed the basis for the charity work.
“That is the main reason we are doing what we do. Anybody that comes to Chrisbow Hb Champions Club for blood transfusion are given free of charge. We don’t also charge for tests to be done before blood transfusion. It is free. God has been so gracious to us. We have partners with us. There is an NGO called ‘For Blood Drive’. They have blood donors and a database. And they send donors. They got to know about what we are doing and they support us by donating blood for us free. And the laboratory that supports us don’t charge for tests. They test donors free. They provide the blood bank, store the blood, and when the recipient is around to take the blood, they don’t charge for blood grouping or cross-matching, so why should we charge?
“They are supporting the vision. Even when three to five pints of blood are needed, they have been donated.
“Because of the frequency of hospitalisation the sickle cell champions spend so much, so I’m trying to do what I as an individual can do to help. But it is not ‘I’ anymore. We have an organizational structure to carry on the vision. People have been volunteers. It’s a charity work.”
She also spoke of the need for haematology analyser to do full blood count. “If we are able to do the full blood count, we will be able to give them stronger medications to prevent crisis.
“There are different types of haemoglobinopathies. The worst of it is homozygous, which is SS. SC is a bit better, but most of the SC also have to be careful, especially the females.
“They will look and behave normal, but when they are pregnant, their bodies cannot cope. That is when most of them know that they are really sick.
“Some of the SS have what we call SS+F. There is what we call fetal haemoglobin, the type of haemoglobin that is in a child in the uterus; that type protects against S. When the children are born, by the age of six, the level of fetal haemoglobin begins to deplete and finally goes off. But in some individuals, by freak of nature that nobody understands, the fetal haemoglobin persists in their lives. Their bones continue producing fetal haemoglobin.
“So, it protects them from the severity of these issues. They don’t have the look of having SS. They are built properly. They don’t fall sick easily.
How do they take care of themselves when pregnant? she was asked.
“At such a time, the person involved is at high risk pregnancy. The first thing is that she should not book at maternity or with traditional birth attendants. She should not just book at just any private hospital, but go to the one which understands her problem. If she needs to be sectioned, it can be done on time, not going to prayer house and at the end of the day when things turn awry coming to hospital when she is about to die.
“From the day she registers, she should have extra care and monitoring, so that in the day of delivery, everything will be smooth. It will not come as an emergency. I started handling one with sickle cell since she was 11 years old. She is married now. I have handled her in pregnancy and she has been sectioned two times. She’s doing fine and is even a nurse with a government hospital.”
She noted that ignorance and superstition are part of the problems, and advised those with sickle cell not to hide it.
“One of the reasons I call it a club is for them to come together, have a sense of belonging and fight stigmatisation. By the time you have sense of self-worth; it will be difficult to put you down. They are human beings. It is not their fault, that is the way they were born, so we should not stigmatise them. We should encourage them and be there for them. I call them champions,” Dr Ola stressed.
She emphasised the need for consciousness by an AS not to marry an AS to prevent having SS as children.
“Those who suffer it pick S gene from their fathers and mothers who are carriers,” she stated.
She also advised those with sickle cell to eat well.
“The lifespan of a red cell with haemoglobin A is 120 days while that of haemoglobin S is 22 to 30 days, so you need building blocks for your bone marrow to produce new cells.
You should engage in healthy eating-vegetables, fruits. “Also take medications and precautions. Don’t go in the rain. Don’t go in the sun. This is because if the weather is too hot or cold, they will have crisis.”
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