Written by: Akpus Adgidzi Immanuel
WORLD SICKLE CELL DAY 2020
Sickle Cell Disease (SCD), the most common genetic disorder amongst Black people, poses a significant psychosocial burden on the sufferers, the caregivers and their families. According to the UN, globally an estimated 5, 000,000 are born every year with this condition and sadly half of them will die before their fifth birthday.
It has been established that Nigeria bears the greatest burden of sickle cell disease in the world. There are forty million carriers of the gene in the country making it a significant public health concern in Nigeria. Owing to the fact that sickle cell disease is very symptomatic and requires constant care; parents of people living with sickle cell disease suffer untold hardship in the course of taking care of them. World Sickle Cell Awareness Day is celebrated on June 19th of each year to raise awareness about SCD and supporting Sickle cell patients.
Sickle cell disease (SCD) is a group of inherited red blood cell disorders. Healthy red blood cells are round, and they move through small blood vessels to carry oxygen to all parts of the body. In someone who has SCD, the red blood cells become hard and sticky and look like a C-shaped farm tool called a “sickle”. The sickle cells die early, which causes a constant shortage of red blood cells. Also, when they travel through small blood vessels, they get stuck and clog the blood flow. This can cause pain and other serious problems such infection, acute chest syndrome and stroke. Common symptoms include; episodes of pain, swelling of hands and feet, frequent infections, Delayed growth or puberty, Vision problems.
SCD afflicts up to 100 million people worldwide, predominantly amongst Black people in Africa, Europe and the America, Arabian people, and those of Asian ancestry. In Nigeria, it is estimated that about 150, 000 children are born with sickle cell anemia annually, with a prevalence of 20–30 per 1000 live births whilst that of hemoglobin SC is approximately 0.7%. The life expectancy of patients with SCD is quite variable. Some pass away at an early age whilst others have a virtually unrecognized condition and are able to live active lives, but only a few live until an advanced age.
Confronting the problem of care for people living with sickle cell disease is becoming an enormous task and a huge social problem due to the magnitude of the problem. This ranges from the large number of people that are involved to the huge sum of money that is lost, the time lost on constant care and most importantly, the emotional trauma those patients and their parents have to pass through on a daily basis. People living with sickle cell disease are always in and out of hospital which creates physical stress, trauma, financial stress and sometimes confusion for their caregivers.
- The physical stress, financial stress and trauma all constitute the burden of caring for people living with sickle cell disease. The physical stress is the body aches, pains, fatigue, sleeplessness and sometimes burnouts experienced by parents of sufferers. The physical stress results from the daily routine care such as feeding, washing of clothes, bathing of the sick, feeding them and accompanying them to clinics that parents render to patients living with this disease.
- The financial stress is mainly the money spent by parents on paying for drugs, hospital bills/beds, and transportation from hospitals and money spent on extra foods and vegetables given to people living with sickle cell disease so as to beef up their general health. The parents of the sufferers have to provide for all these without any help from any government agency which constitute serious burden to them.
- Also, the trauma associated with the disease is enormous for parents. It was shown that sickle cell disease is a significant stressor on the family as it brings about incessant quarrels between spouses which may lead to family break up and more heartache. Trauma here describes the emotional stress that parents go through which include fear that the child may die at any moment which can be devastating in a culture in which having children is the main reason for marriage. Trauma also includes the regrets, the anger, strained relationships between spouses due to sickle cell disease in the family, the conflicts which usually ensues between parents of a child living with sickle cell disease.
These burdens can be reduce in the following ways;
These burdens can be reduce in the following ways;
- Caregivers are faced with enormous financial, interpersonal and psychological problems. Social support should be available to alleviate caregivers’ and/or family members’ burdens. The impact on the family is worse in developing countries such as Nigeria because of inadequate social welfare and health care services.
- Considering that the overall heaths of these patients depend on the quality of life and psychological preparedness of the caregivers, an assessment of the burden of the disease on these caregivers and family members is desirable.
- Within the family environment, children with SCD need optimal family support, understanding and care, particularly in terms of providing adequate nutrition and health care delivery so as to achieve an optimum and steady state of health.
As we celebrate World Sickle Day, let us know that our little contributions matters. In Nigeria, 150,000 babies are born with sickle cell disease annually. Every single day, Nigeria loses about 2,300 under five year olds.
Leave your world sickle cell day message below!!!!
This Awareness is in loving memory of my Best friend, Sister and Hero
Awadzi Joy Yohanna