Sickle cell disease is a genetic multisystemic disorder characterised by chronic anaemia, episodes of acute and possible chronic pain, progressive organ failure and a possibility of reduced life expectancy. It is originally a blood disorder that is inherited from one’s parents but it can end up affecting all body systems. Although it has been declared a global disease, the highest burden of the disease is among the black race and Nigeria has the highest cases of sickle cell disease in the world.
The disease has a way of affecting every area of lives of those who inherited it and this inspired this article. I will be highlighting the health, psychosocial and financial implications of sickle cell disease on a Nigerian child with a focus on the interplay of these implications and possible solutions.
The health impacts of sickle cell disease on sufferers are the complications which remain the scariest implication of the disease. The red blood cells of those with sickle cell disease are sickle shaped instead of being biconcave. This abnormal shape makes the blood sticky and rigid. As a result, it obstructs blood vessels and impairs blood flow to organs causing different complications in the process. The abnormal shape also causes blood to break down more easily and frequently. Pain crisis is the most distinctive feature of sickle cell disease. It is said to be the most common symptom in people living with the disease who are over two years of age. This pain can be mild, moderate or severe. It can last for hours, days, weeks or even months. Another complication is chronic anaemia. The sickle-shaped red blood cells breaks down easily and puts the body in a chronic anaemic state.
Therefore, many people living with the disease usually need blood transfusion regularly depending on their disease severity. They are also predisposed to infections, impaired blood supply to the spleen caused by the sickle-shaped red blood cells causing the spleen which is important for immunity in the body to shrink and stop functioning, thus predisposing people with sickle cell disease to numerous infections.
Other complications include renal failure, retinopathy which can cause blindness, acute chest syndrome and pulmonary hypertension which are pulmonary complications, neurological complications like stroke. One of the commonest causes of stroke in children rem ains sickle cell disease. Not to forget complications like sensorineural deafness, leg ulcers, avascular necrosis, stunted growth, developmental delays, physical disabilities, enuresis, gallstones and heart diseases among others. Progressive organ damage due to inadequate supply of blood and oxygen to body organs occurs in sickle cell disease. Multiple organ failure and many of the other complications mentioned above can lead to early mortality for people living with the disease.
The psychosocial implication entails how people living with sickle cell disease are affected psychologically and socially by the disease. It is one aspect that needs more attention but it is usually overlooked. First, I would like to discuss the stigma associated with the disease in Nigeria.
Many Nigerians wrongly believe everyone living with the disease will die before 18 years of age and they are usually quick to say that to the sufferers.
This stigma makes those living with the disease hide their status from people. It makes many of them feel abnormal and puts them in a bad psychological state.
Apart from stigma, the complications of the disease take its toll on the mental health of people living with the disease. There are complications like developmental delays which make people living with the disease feel abnormal when their body doesn’t grow like their peers. Falling sick often is often associated with increased unemployment rate among people living with sickle cell disease.
The majority of them are also single because people are scared that people living with the disease will die early and do not want to date or marry them. All these result in psychosocial problems such as depression, anxiety, social withdrawal and loneliness.
The financial implications of sickle cell disease, especially in low economic regions like Nigeria, also have an important role to play. Many countries in Africa have no health insurance schemes or free health for people living with the disease.
These people fall sick often and have to visit hospitals regularly. Considering the high rate of poverty in Africa, it will be difficult for people living with the disease to cope with the financial implications. Sickle cell disease is an expensive disease to manage, because of this, many people living with the disease die because of poverty and not necessarily because of the virulence of the disease. Many parents manage their children or family members with sickle cell disease at home because of the cost of taking them to hospital.
Several studies have shown life that the life expectancy for people living with sickle cell disease in Africa is lesser in comparison to developed countries where there are advanced medical care and health insurance schemes.
It wouldn’t be wholesome to emphasise on the implications of sickle cell disease on a Nigerian child and not discuss possible solutions to them. One of the solutions that can be helpful will be increasing sickle cell awareness.
This is to educate people on genotypes and genotype compatibility because choosing a genetically compatible partner. This will prevent having children with sickle cell disease.
Provision of good health care and new medical discoveries might also be helpful in prolonging the lives of people living with the disease. Provision of regular psychological evaluation and management for the affected can be helpful when it comes to the psychological implications.
Good family and social support will help with social withdrawal and loneliness. The government should also provide a free health care and health insurance scheme for Nigerians living with the disease to help mitigate the financial implications.
In conclusion, we see the grievous impact that sickle cell disease has on the health, psychosocial and financial life of people living with it. Hopefully, the government will take to the proposed solutions and make life better for that Nigerian child living with sickle cell disease.
Adesoye, a medical doctor, is the founder, Sicklelive Foundation