The year 2020 marks the 110th anniversary since Dr James Herrick published his first observations on peculiar elongated cells – what is now known worldwide as Sickle Cell Disease (SCD), or before as the “rainy season rheumatism” in Western Africa.
Though it has been 110 years since the discovery of SCD and some improvement have been made in the care of people with this condition, there is much more that can be done by our scientific and engineering community.
Not a lot has been achieved in the treatment of Sickle Cell Disease (SCD), let alone the establishment of an affordable cure and management of the condition.
Sickle Cell Day
Having addressed the ongoing emerging model of comprehensive clinical networks of care for other diseases, it is important, especially at this crossroad to also ensure that efforts at comprehensive care also addresses the problem of SCD, since finding a cure for SCD has taken all these years for those of us in this part of the world.
The year 2008 saw the General Assembly of the United Nations (63rd session) adopting a resolution recognising SCD as a public health problem and one of the world’s foremost diseases.
The UN declared June 19 to be celebrated as the World Sickle Cell Day annually to cover almost all the curable criteria through the fast awareness campaign to take this genetic health condition under control all over the world.
The day is to give the disease the required heightened awareness and activism, diagnosis, management and prevention.
SCD in Children
SCD is one of the most common genetic diseases and is the single most important genetic cause of childhood mortality globally.
The World Health Organisation (WHO) establishes that Sickle Cell is a major genetic disease that affects most countries in the African Region.
Majority of Children with the most severe form of disease die before the age of five usually from malaria and other infections, acute anaemia without ever having their underling SCD properly diagnosed.
Many surviving children grow poorly, suffer pain attacks, stroke and many other complications throughout their lives with most of them dying at a relatively young age.
Despite the fact that UN has called for global efforts “to bring the disease out of the shadows” relatively little attention has been given to assessing the burden of SCD and how to reduce it in Africa.
Regrettably, after all these pleas, the expected public education to sensitise people to the care of people with the condition and reducing the prevalence of in the country is not encouraging.
About 10 to 40 per cent of the population in various countries, including Ghana, carry the Sickle Cell gene resulting in at least two per cent prevalence SCD.
Clearly, these statistics are staggering because we have, collectively, as a nation probably failed to give SCD the necessary public attention it requires.
When diseases like malaria, jaundice, cervical cancer, gout, stone in the kidney, bilharzia, tuberculosis, cholera, HIV/AIDS, and is now COVID-19 among others are mentioned, everybody is at least able to state the causes, mode of transmission and prevention, because a lot of education has taken place.
It is against this backdrop that Sickle Cell Condition Advocates (SICCA) finds it unfortunate that information flow like the underling mechanisms of this genetic disease, continuous awareness creation and advocacy and to a very large extent the need to avoid stigmatisation has not been forthcoming.
Give SCD national attention
We are of the view that SCD must also be given the national attention it deserves like the manner in which the other diseases have been hyped especially, COVID-19.
The advocacy must not be left in the hands of a few people, all must get on board. There is the need for a collective and coordinated global response to assist those with the condition and do our best to see to its prevention.
People have to be educated on SCD so that they see the need to get tested and go through counselling to know their sickle cell status before decisions on childbearing.
It is our prayer that corporate bodies will partner with SICCA just as they are doing now with the prevention and cure of COVID-19, so that we can prevent SCD which in reality affects about 30 to 40 per cent of our population.
The Writer, Charlotte Owusu, is the Founder/CEO of Sickle Cell Condition Advocates (SICCA). This article was originally published on Monday, July 6, 2020 on page 104 of the Daily Graphic (Ghana).
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