The Pain of Living with Sickle Cell Anemia

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David-Chyddy Eleke reports on the plight of those living with the Sickle Cell Anemia and how they rarely get support

It was about 3:15am, at Odoagba Estate; a sleepy community in Awka, the capital city of Anambra State. A painful cry of a girl pierced the air. The cry which was laden with pain sent chill up the spines of residents of the neighbourhood.

The voice was that of Agnes, a 21 year-old patient of sickle cell anemia. She is a secondary school graduate who lives with her mother and four other siblings. Her mother is a widow who was left with five children, three of which are anemic, most commonly known as sicklers.

One of their sisters; Chisom had died less than a year ago at the age of 13, leaving Agnes and her immediate younger brother; Okwudili as the two sickle cell children in the house. Her elder sister and brother were lucky to have escaped being carriers. Agnes had leg ulcer, a known characteristic of sickle cell anemia patients, which left her with a smelly sore on her right leg that has refused to heal, despite medical attention. The shout that early morning was not new to most people in the neighbourhood, because once in a while, she or any of her other siblings usually suffered midnight crisis.

Mrs Theresa Nwachukwu, mother of Agnes in an interview with THISDAY said that, “Since my husband died, I have been left with the pain of taking care of the children. Having a sickle cell child is not a good thing. No matter how much I have in my hands, once they experience crisis, all the money goes down to taking care of them. I am a trader, and being the only one taking care of the children, I experience a lot of setback especially in finances,” she lamented.

Cause of Sickle Cell Anemia
A hematologist, Dr John Azuka told THISDAY that the disorder results from genetic incompatibility. He said, “There are three genotypes carried by everyone, one is SS, the other is AS and the other is AA. If your genotype is SS and you marry someone who is SS, you will have sickle cell children. If you are AS and you marry SS, chances are that you can have children who are SS too, or AS marrying AS. In Nigeria many people do not know their genotype, but we are working towards sensitizing people.

“Midnight crisis is very dangerous period for patients of sickle cell anemia. Loss of water, mosquito bites and infection are the key things that trigger the crisis. Midnight crisis is what kills sicklers, and it is very popular and dreaded among sicklers. It is a general body pain that looks like someone is using saw to cut your bones. It is usually very painful. It is a condition where the blood in your body has congealed, and is trying to force itself to pass through your vein, and that is what causes the pain. What can stop it is setting up a line to rehydrate the patient. That is what can stop it, that is when water has passed in and flushes the bad blood and there is enough water in the blood.

Drug Addiction among Carriers
Investigations showed that there is high rate of drug addiction among sicklers, and this is due to either the quest to reduce pain during crisis period, or the cost of receiving treatment at designated health facilities.

The national coordinator, Association of People Living with Sickle Cell Disease (APLSCD), Mrs Aisha Edward Maduagwu alluded to high level of drug addiction among sicklers, but attributed it to a number of factors including carefree attitudes of doctors, high cost of treating patients among others.

Maduagwu, a carrier said, “When you don’t go to hospital during crisis period, the tendency is that you may become addicted to the drugs you usually use to treat yourself by over using them. What also causes this addiction is high hospital bills, which pushes the patients to resort to self medication. The only thing that can stop it is low hospital bills. What do you think will make a person to open a syringe, suck up some doses of drug and inject themselves?

“Sicklers are endowed intellectually, and I believe they are smarter than a normal being. These are people I lead. Most of them are curious and they keep asking you questions when you are managing them, so the next time they have crisis they just keep injecting themselves, because they have seen the drugs used on them by the doctors.

“Most of them will turn to beggars just to get money to buy drugs to inject themselves. I was addicted for 13 years, but I stopped it myself because it was ruining me. I was in the military then and was very brutal. I am speaking out of experience. Because of addiction, I didn’t want to associate with people, I was very strong and tireless, but I found out that most times it made me feel drowsy and even losing concentration, so I decided to stop.

“The medical practitioners are supposed to know when to administer a drug and when to talk to the patient by way of counseling, but they are so lazy and so business minded. The doctor wants to sleep without the screams from patients disturbing him, so he will just knock you off with a painkiller. When you wake up again and you scream, another lazy doctor on duty who does not want to be disturbed and didn’t know or doesn’t care that you have had one already will not ask the last time you had the dose, but will simply use the drug to knock you off again and this will continue and your system will begin to get used to it.

“So, when you eventually leave hospital, you find out that you are used to killing pain with that same drug, and with time, you get to take it even more regularly than you should, before it can work. When you go to a pharmacist to buy, you find out that instead of the pharmacist to demand for prescription from doctors, they rather inflate the price and if you can afford it, they sell it to you, because once they suspect that you are an addict, you are a potential customer, because no matter the price, know you are very crazy about it, and will always return.

Confession of Addicts
A sickle cell anemia patient, who is an addict, but refused to give his name who spoke to THISDAY said, “I am 29 years old. I am old enough to be a man of my own, but because of this sickness, I still depend on my parents. There is nothing I hate more than falling sick because this my sickness has drained my parents wealth, and they us to look at me as a witch who was sent to punish them. To prove that I can live without being a burden to them, I have copied down the drugs they used to administer to me when I am in crisis condition, so instead of me to be hospitalised for less than one week, and the doctors charging us as much as N100,000 in some cases, I simply go to the pharmacy and buy the drugs and administer to myself.”

Daniel (not real name) confessed to having packs of syringes at home, which he uses to administer drugs to himself. He also stated some of the drugs he uses to ameliorate his pain to include; Fortwin, Morphine, Petildine, Tramadol among others. Most of the drugs listed are banned drugs, but he insisted that he had designated places where he buys them, even though not at a normal price, as it is usually higher, but he insists it is much cheaper than what hospitals charge after administering them to him.

“If you doubt, go to any chemist shop and ask for these drugs and you will get them. Even though they are restricted drugs, if you present yourself as one who has a child who is a sickle cell patient, without behaving like a security personnel, they will sell to you,” he said.

Maduagwu corroborated the claims, saying, “I for one, during December, I was hospitalised. I was admitted on December 31, and discharged on January 9, my bill was N78,000. I knew the drugs I was placed on. They were anti malaria, antibiotics, anti ulcer, the rest were drips, and I drank about 15 bottles of drip, which I know each is about N200 per bottle. So, let’s assume I took 20 bottles of drip, which is N2,000. There is no anti malaria that is more than N1,000, there is no antibiotic that is more than N2,000, there is no anti ulcer; Omiprazole, gestid and others that can be more than N2,000 so when you sum up all these things, plus the nurses charge and doctors charge, there is no way it can be more than N10,000, so why are they taking N78,000 from me? Did you inject cocaine into my system because I need to know?

“They were so manipulative, dubious and criminally minded. They could see that I was reading all the drugs they brought. There was something I did for all our members, I gave them a surgically equipped first aid kits which contained all their drugs, so when you go to hospital, you just find out that all you need is things like syringe and drip that is missing or in the case of drug transfusion. The most expensive drug is blood, and let’s assume I was transfused, is that what would make them to collect as much as N78,000 from me? This was a missionary hospital, Are they making me to feel bad because I am a sickler or they want me to go and commit suicide because of my condition? Even if it is a parent that will pay, don’t you know the kind of hatred that will be inflicted on me at home,” she lamented.

APLSCD Advocates for Passage of Sickle Cell Law
Maduagwu took this reporter on a journey of the group’s fight for the passage of the sickle cell law by the Anambra State House of Assembly, saying, “If this law is passed by the House of Assembly and signed into law by the state governor, our people will be able to get jobs, and by so doing will be able to fend for themselves. A lot of our members are suffering untold hardship. That is also why most of them go into drug addiction. You will see some of them, just look at their arms and you will see that they have injected everywhere in their hands with needles until there is no more space to take more needles.

“Some of our members are even kept in homes and locked there because people believe that they are ashamed to show that they have children that are sicklers. Some are taken everywhere for prayers and subjected to all manner of deliverance, and made to drink anointed oil, whereas their problem is simply genetic. This law if passed will help us too to get help from people and be taken seriously too.

“HIV and AIDS patients get support from donor agencies, and several groups advocate against their being stigmatized against, but sicklers are stigmatised against, everyday. Imagine going through pains all the days of your life, just because your parents refused to adhere to genetic compatibility before marriage. You now bear the brunt of their ignorance and live in pain all through your life. This law will address it, Maduagwu said.

Obiano Signs Sickle cell law
In Anambra State, reprieve may have come the way of persons suffering from sickle cell anemia as Governor Obiano in marking the 2020 world sickle cell on June 19,2020 signed the sickle cell bill to law. The law which has immediately becomes operational criminalises marriage without test for genetic compatibility, just as it will also help sufferers to cross the hurdle of discrimination in seeking for jobs among others.

The law read in part, “As from the commencement of the law, persons with unqualified Sickle Cell Status Certificate, SCS, shall NOT be married as husband and wife. No parent, guardian, person or group of persons shall give out a maiden in marriage without verification of a qualified SCS certificate of the couple. No religious body or registry shall wed any person (s) without verification of a qualified SCS certificate of the couple.

“Any person who contravenes the provisions of this section shall be guilty of an offense and is liable on conviction to the fine of #200, 000 or imprisonment to a term of three years or both. The Sickle Cell Status Certificate shall be issued by a qualified and licensed medical laboratory scientist. Anyone guilty of the offense shall be liable on conviction to the fine of #200, 000 or imprisonment to a term of three years or both. The Sickle Cell Status Certificate shall be issued by a qualified and licensed medical laboratory scientist,” the law stated.

Maduagwu reacting to the law noted that the group will remain grateful to the Anambra State government for leading the fight/awareness on the disease by enacting a law prohibiting couples of AS or SS genotypes from marrying each other.
“No government in Nigeria or Africa has done what Anambra State government did for APLSCD under the administration of Chief Willie Obiano. The law stops individuals of AS or SS genotypes from marrying each other and giving room for more enlightenment campaigns against the disease.

“Our people are the most hit essentially during this period of the COVID-19 pandemic. This is because of some underlying health challenges we normally face before COVID-19. But the Anambra State government through the wife of the governor, Dr. Ebelechukwu Obiano donated food items that were rich in proteins and vitamins as palliative for our people.”