By Denrele Animasaun
“Educating the mind without educating the heart is no education at all.— Aristotle
The World Sickle Cell Day is on 19th of June. The wear red for sickle cell day was established by the United Nations General Assembly in 2008, to raise awareness about the sickle cell disease globally. Sickle cell affects us all directly or indirectly and it has affected and continues to affect many families who have lost family members as a result of the condition.
Contrary to common knowledge, people in other countries are also affected like India, Saudi Arabia, Turkey, Arabic Peninsula, Brazil, Surinam, Guiana, Southern Italy, Greece and black people in diaspora. Studies have shown that Nigeria has the largest population of people with Sickle Cell Disease in the world, and with over 150,000 Nigerian babies born with sickle cell every year.
For those affected and their families, it is an antagonising and traumatic ordeals watching their loved ones go through one crisis after another. Without proper treatment and care, sufferers have a reduced life affected by the condition and complications as a result of the conditions. Working in the black communities, sickle cell is often misunderstood and feared.
As a result, most people do not want to talk about it or admit that they are carrier or that they have sickle cell. Some fear talking about sickle cell may invite the condition on themselves or their family. Extraordinarily, many do not know their genotype and they often blame the woman as the cause of the child having sickle cell. And, we all know that even in this day and age, many still believe that it is a spiritual condition caused by witches or evildoers -abiku or ogbanje.
Unfortunately, this myths and misconception affects the sufferer from getting the proper intervention that they may need and this affects the overall outcome. The fact remains that many cannot face the fact that it is generic and the person affected will need a lifelong treatment. With proper care and treatment, a sufferer, can lead a relatively good quality life.
Presently, scientists are working towards finding a cure by raising awareness campaigns, educational programmes on early diagnosis and management. Close to home, studies have shown that more than 1000 babies are born with Sickle Cell Disease in Africa and many die before the age of five years. The awareness helps to bring the condition to the public arena. It is a big public health issue and the government must help to finance health programmes in order to ensure the health of the nation.
Sickle cell expert, Dr. Akinsete, said many of these children do not grow into adulthood, especially in Nigeria where awareness and management of the disease is slow, and urges that Nigeria must be in the forefront of finding a cure for it since the country has the highest burden of the disease in the world. She said that gone were the days when SCD was a death sentence: “With proper information, the disease can be managed successfully, while the victim leads a normal life.
So what do we know about sickle cell? It is an inheritable, genetic and fatal disease causing red blood cells disorders which has been classified as sickle cell anaemia and may lead to death. It is the most common public health challenges that face people living in African and Asian countries of the world. Sickle cell anaemia means the person suffering from anaemia (has less number of haemoglobin) due to the abnormal sickle shaped red blood cells which gets stuck in their small blood vessels and cause blockage in the continuation of the blood flow into the blood vessels and whole body organs cannot get proper oxygen which leads to the common health problems like severe pain, organ damage or failure, severe infections, stroke, headache, liver problems, heart problems and so much more. Some are prone to strokes due to the complications of the disease. This condition needs effective control with early detection and public awareness.
So it is imperative that these activities continue to raise awareness about the disease as it affects millions of children every year and which ultimately affect and reduces their quality of life. Let’s be clear here; Sickle cell disorder (SDA) is a “significant cause of mortality and morbidity. People with the disease have two copies of the sickle globin gene, which produces an abnormal haemoglobin and red blood cells that have haemoglobin S instead of haemoglobin A.
In sickle cell anaemia, the most common form of sickle cell disease, the body makes sickle-shaped red blood cells that contain abnormal haemoglobin. These red blood cells are less functional and blocks blood flow, causing pain and organ damage, and increasing the risk for infection.
During which they have crisis. If anything, it is important to know one’s genotype and to seek help for those diagnosed with sickle cell. With proper treatment, the disorder can be managed. A combination of folic acid and penicillin seem to work for many and managing the pain with pain killers under medical supervision is strongly advised. They are also advised to reduce stressful environment and situations as it can ignite a crisis.
Drinking regular water is very good to keep the person hydrated and small and regular exercises can ease some of the joint pains. In the UK, it is routine, to test pregnant women from the affected ethnicities and the specialists advise them if the baby they are carrying is a carrier or have sickle cell.
Also they have support groups and those in crisis are often fast tracked at accident and emergency so that they can receive treatment. What can you do? It helps to talk about how sickle cell affects the suffer and their families.
With doctor’s advice, the sufferers should take folic acid. Drink lots of water, avoid extreme temperature as exposure to extreme heat or cold can increase the risk of a sickle cell crisis. Daily exercise is advised but not too rigorous or it could lead to Sickle cell crisis. Use painkillers with caution and follow medical advice to avoid over dosing as too many can affect the liver. To avoid complications use daily prescribed folic acid.
The bone marrow needs folic acid and other vitamins to make new red blood cells. Eat a balance diet with green and red vegetables. Dehydration can increase their risk of a sickle cell crisis. Drinking water throughout the day, aiming for about eight glasses a day. Increase the amount of water you drink if you exercise or spend time in a hot, dry climate. Be aware of stressful situations, do not do too much. Be brave to let people know that you have sickle cell and educate them.
For those living with sickle cell, it is not your fault and do not blame yourself. It is understandable to feel low and sometimes feel isolated.
People over compensate for your condition. You can do anything you put your mind to and achieve success. There are new therapies such as the marrow transplant and medication combinations. People live better quality long lives now than ever before. For families of people with sickle cell, get some education on sickle cell management on sickle cell websites. Do not blame yourself, don’t feel guilty and be part of the solution, participate in raising awareness about sickle cell and prevention.
I know no one wants to address someone on a first date by asking them about their genotype. At some point, you will have to broach the subject if you are getting serious with the person. If one is a carrier and goes with another carrier, the offspring is likely to have sickle cell.