WORLD SICKLE CELL AWARENESS DAY 2024: SHINING THE LIGHT IN THE CATHOLIC HEALTH NETWORK IN UGANDA
World Sickle Cell Awareness Day 2024:
Shining the Light in the Catholic Health Network in Uganda
Dr. Ronald M. Kasyaba,
Uganda Catholic Medical Bureau, Kampala – Uganda.
Every year, on June 19th, Uganda joins the rest of the world to commemorate World Sickle Cell Day, to increase public knowledge, raise awareness and reduce stigma about Sickle Cell Disease.
The United Nations General Assembly recognized sickle cell disease (SCD) as a global public health problem due to its increasing burden, particularly in sub-Saharan Africa.
To raise awareness, a resolution was adopted in 2008, designating June 19th as SCD Awareness Day. The international awareness day is observed annually with the goal to increase public knowledge and enhance an understanding of sickle cell disease, and the challenges experienced by patients and their families and caregivers.
In Africa, the majority of children with the most severe form of the disease die before the age of 5 years, usually from an infection or severe blood loss.
In countries such as Cameroon, Republic of Congo, Gabon, Ghana, and Nigeria the Sickle Cell Trait prevalence is between 20% to 30% while in some parts of Uganda it is as high as 25%. Prevalence was highest in the Mid-Northern, North-East, Mid-East and East-Central regions of Uganda, and Sickle Cell Disease prevalence as high as 2 – 2.7% in parts of Mid-East, Central 2 and East Central regions.
A 3-year nation-wide screening survey was conducted between 2015 and 2018, and findings revealed a high prevalence of sickle cell trait and sickle cell disease in Uganda with a crude birth-rate of over 240,000 sickle cell trait births and over 17,000 sickle cell disease births occurring annually in Uganda.
Sickle cell disease disproportionately affects babies in Uganda, and many go un-diagnosed due to lack of deliberate and proactive newborn screening and yet newborn screening lies at the heart of the fight against SCD. Routine newborn screening is needed to save lives and improve care—and as such June 19th among many other days—will shed light on SCD through increased public awareness and emphasise the need to have proactive initiatives and efforts to screen and diagnose SCD early—thereby providing appropriate treatment and alleviating social troubles related to the disease, such as chronic ill-health, missed education opportunities, broken families and marriage.
Routine newborn screening for sickle cell disease could have a profound impact in stemming complications and averting loss of life among people diagnosed with the condition.
This year, the day is to be commemorated under the theme: “Shine the Light on Sickle Cell”.
This theme encourages us to increase awareness of the public & community of the burden of SCD disorder, urges health institutions to pay attention to sickle cell disease and anaemia through developing health programs to facilitate access to screening, early diagnosis and appropriate affordable treatment, raising awareness of the importance of pre-marital screening to reduce transmission of sickle cell disease among generations and promoting and supporting research to improve quality of life for those affected.
