First wealth is health -Ralph Waldo Emerson
By Denrele Animasaun
19th of June is World Sickle Cell day and it is marked around the world to raise public awareness about the condition, organise activities and campaigns to educate people on how to manage the conditions.
The World Health Organization (WHO) estimates, sickle-cell anaemia affects nearly 100 million people throughout the world, with over 300 000 children born every year with the condition. Tragically, the majority of these individuals will die in childhood due to lack of basic care, and those who survive into adulthood often face a life of chronic disability and premature death unless disease-modifying therapy can be provided. The WHO is urging countries affected by SCD to establish health programs at the national level and promote access to medical services for people affected by the disease.
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 block blood flow, causing pain and organ damage, and increasing the risk for infection. During which they have crisis.
It is important to know one’s genotype and to seek help for those diagnosed with sickle cell disease. Within Nigeria, the blight of sickle cell is very real and almost every family has a member who is a carrier or with SS. Everyone knows someone who is affected SCD.
For years, the condition was surrounded in myth and stigma that is more or less intact dependant on the level of education and access to health. In the not distance future, they are seen as Abiku or Ogbanje because of their unexplained ,sudden and frequent ill health characterised by crisis, stigma, fear, shorten life span sadly exacerbated by inadequate medical care and knowledge. It is a potentially fatal disease and, according to the World Health Organization (WHO) it is one of the main causes of premature death amongst children under the age of five in various African countries.
According to the Coalition of Sickle Cell Non-governmental Organisations in Nigeria, it is said that, at least 150,000 children are born with sickle cell disease in Nigeria every year, while about 40 million Nigerians are healthy carriers of the sickle cell gene. With such high numbers, Nigeria has the largest population in the world of Sickle cell sufferers in the world but unfortunately, it has inadequate and ineffective advocacy health education programmes on prevention, treatment and management. More has to be done to prioritise the health of sufferers and management of sickle cell condition in Nigeria. With better planned health programme, people living with sickle cell can have a better quality of life and prolong their lives with a reduction of crisis and opportunistic health complications and mortality. There are exciting developments where bone marrow transplant can give a patient a 50:50 survival chance but presently there are no cures for SD.
According to one expert’s advice, those who were about getting married to know their genotype and that of their spouses to be, as prevention was the best way to control sickle cell. And :”Sickle cell is preventable if people with the AS genotype do not get married to spouses who also have the AS genotype,”
Dr Ufon Esien, haematologist: “Children with sickle cell normally had hand and foot syndrome, joint pains as they grew older, they may also have kidney problems, acute chest syndrome and even anaemia, these conditions were not curable but manageable,”
The World Health Organization has also made some commitment for promoting awareness of this disease such as:
• Increasing effective awareness of sickle cell anaemia as a major health issue worldwide.
• People living in each and every community all around the world should get aware about.
• All the myths and stigmas about sickle cell disease are removed.
• All the member countries are requested to establish various health programs to make easy access to the treatment for this disease on the national and regional level.
• Promoting the availability of satisfactory access to the technical supports and medical services for all people suffering from this disease.
• All the medical professionals are given well training facility for better prevention, research work and accurate implementation of the resources minimizing disease complications.
Some of the objectives of celebrating world sickle cell day event annually are mentioned below:
• To distribute the real information about the sickle cell anaemia much closer to the common public worldwide.
• Offer a big opportunity to all of them suffering from this disease by letting them know about their sickle cell status through an early diagnosis.
• Provide them opportunity to get contacted with the service providers for their confirmatory tests.
• To get support from the health organizations for funding, screening reagents, microscopes and etc.
• To get together all the medical professionals including lab assistants, scientists, nurses, counsellors and etc.
• To get online support through the various social media websites to easily and immediately distribute messages among youths and other age group people.
• To implement new health strategies to completely eradicate this disease from the world.
• To motivate private, government and other health organizations for active participation in the complete eradication of this disease.
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 hydrate and small and regular exercises can ease some of the joint pains.
Over in the UK it is routine to test pregnant women from affected ethnicities and 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 as soon as they arrive in hospital, thus arrest the severity of the crisis as well as potentially save lives.