We have all heard or read about sickle cell disorder. An inherited blood disorder caused by defective hemoglobin as a result of genotype incompatibility. People with sickle cell disorder has red blood cell that are sickle or crescent shaped, that blocks the the blood flow causing pains (sickle cell crisis)
As a sickle cell carrier, I have lived with this condition and its inherent health challenges and complications with devastating consequences in my family. Before the advent of civilization and knowledge in West Africa cum Nigeria, sickle cell children when born are perceived as evil and diabolic children because of the constant pain and suffering they come along with, making their parents feel dejected and gloomy for their lifespan is always short. They don't live beyond their 4th birthday, thereby throwing their families into mourning after spending fortunes trying to cure them. They are referred to as ogbanje in Igbo or abiku in Yoruba.
But when the ignorance about sickle cell was dispelled with medical science and knowledge, people started understanding the situation more better. Genotype education became active with government intervention aided by NGO's. There was an awakening on the causes of sickle cell and many carriers and their families became aware on how best to manage the condition inorder to live longer years. But in all, the consequences of giving birth to sickle cell children still persists. Frequenting the hospitals and spending exorbitant money on drugs and treatment still remains, the midnight pain crisis that can keep the entire family awake or even to risks their lives seeking medical attention in those ungodly hours.
I experienced all these as a young child growing with sickle cell disorder, although I got the best of support and attention from my family who loved me so dearly, most times I feel bad about what they had to go through to care for me. I would tell you that sickle cell is a constant drainer of financial resources. Exceptional care is needed when dealing with sickle cell disorder and it doesn't come cheap. I could vividly recall when my dad put up one of his buildings for sale just to give me the best of medical attention.
Moving forward as an adult, I had refused to succumb to the limitations of sickle cell. Doing everything possible to achieve success and greatness. My education, although punctured with incessant health breakdowns, I managed to attain good results and pursued my career vigorously. I didn't entertained or wallowed in self-pity. This should also be an advice for persons living with sickle cell disorder out there, don't allow your pain to define; don't brood over negative opinions or comments from people about your condition; always cultivate a positive disposition.
My diligent service in the Nigerian military gave me the foundation to fearlessly confront any danger or threat confidently. I saw sickle cell disorder as more danger and threat to the society, and began mapping out plans to eradicate it for good. I applied for resignation from the Army on health grounds, after being diagnosed of avascular necrosis, (the death of bone tissue due to lack of blood supply) a prominent feature in sickle cell disorder. Other health complications for sickle cell patients are organ failures characterized by protruding tummies, shortness of breath, jaundiced eyes and sickling appearance.
I have witnessed firsthand the havoc sickle cell can wreck in a family, the desperation for succour and subsequent exploitations that follows. Unorthodox health practitioners charging sky high fees from desperate parents telling them about some surreptitious cure for sickle cell. The worst exploitations of sickle cell patients are from such obnoxious health practitioners and their captivating stories of curing sickle cell. I hope the government and security agencies should put more restrictions on their activities and clamp down on those charlatans bringing more pains and agonies to add to sickle cell disorder.
With my experience gained in the military, I went ahead to found an organization to eradicate sickle cell disorder through sensitization awareness and genotype education, while on the other hand, championing the rights and protection of vulnerable sickle cell persons from exploitations and stigmatization. Our membership base grew rapidly because it is as if persons living with sickle cell have been waiting for such an organization to sprout up. Those who where boxed inside a closet due to stigmatization or discrimination began to identify with our cause. They found a mouthpiece to speak against societal insensitivities to their plights. We had a community where we can now lookout for each other, while drawing the attention of governments and other relevant stakeholders to the dangers of sickle cell disorder with the hope of a possible intervention.
Our organization, registered under the CAC act as a nonprofit organization, began its massive sensitization programs in schools, religious centers, youth groups and rural dwellers. We found out about some sharp practices that contributed to the astronomical rise of sickle cell births. Couples where falsifying their genotype results in order to marry prime and affluent suitors. Some marriage counselors and officials responsible for verifying genotype certificates before permitting marriages to go ahead had all compromised. It was a corrupt and chaotic condition. And these counselors and officials became priorities in our sensitization and awareness campaigns.
Another disheartening encounter was when we noted that some students of opposite sex in tertiary institutions are often cohabiting with each other, getting pregnant along the line and giving births to sickle cell children sometimes. The sickle cell child from this unprepared union is often a victim of neglect and deprivation, because the young parents are not prepared psychologically to deal with such debilitating health condition of the child. The man always absconds, leaving the woman with the responsibility alone. The woman might in turn pass the burden to her aged parents at home inorder to continue with her life pursuits.
Government has a critical role to play in the fight against sickle cell disorder. Legislation and implementation of a sickle cell law being the answer to this quagmire. As a sickle cell advocate, I championed the enactment of the Anambra State Sickle Cell Disease (Eradication and Prevention) Law 2019. The law is meant to center all government efforts through a sickle cell monitoring committee that would influence town union leaderships into being responsible for ensuring a certified genotype results from intending marriage couples, with a strong deterrent measures for defaulters.
The law will also assist in the socioeconomic development of persons living with sickle cell. Free Health insurance inclusive. But if government can implement all the provisions enshrined in this law, sickle cell disorder can no longer rear it's ugly heads in disdain to our common good. Government have to show that commitment without compromise or laxity.
Persons living with sickle cell must be able to take care of themselves especially their environment and personal hygiene. They must not engage in arduous works to prove anything, but must contain themselves according to their capabilities and thresholds. They must protect themselves from malaria and treat any symptoms of malaria effective immediately. Eating balanced diet is important especially fruits and vegetables, while taking liquids like water often for rehydration. They should guard against any emotional turbulence that will make them sad for long periods. They should note their pains and suffer silently but confide in any family members, friends, colleagues, or care giver.
When visiting the hospital, sickle cell persons should submit themselves to any tests as directed by the physician and take every prescriptions religiously. They shouldn't give in to self medication no matter the urge or cravings to do so. Most sickle cell patients fall into self medications because they are poor and afraid of incurring exorbitant medical fees. When they begin to administer opioids drugs without doctors prescription inorder to escape to euphoria away from persistent pains, they end up damaging their organs like liver and kidney, creating more complications for themselves. Some sickle cell patients have suicidal thoughts and should be monitored to prevent them from harming themselves. I wish you a successful and memorable August Meetings.
Signed.
Aisha Edwards Maduagwu,
National Coordinator,
APLSCD and
Director,
Sickle Cell Orphanage and Underprivileged Home Agulu.
08033222007