A non-profit organisation here is observing World Sickle Cell Awareness Day on Friday with the launch of the first digital health platform in the Caribbean built specifically for people living with sickle cell disease.
The Sickle Cell Cares Foundation Inc. (SCCF) founded in 2013 by Kellyn George, who is living with sickle cell disease (SCD), said that the SickleConnect platform is free to download and puts health management tools directly in the hands of SCD patients. ‘From a smartphone or any device with internet access, patients can now track pain levels and triggers, manage medications, monitor daily hydration, log lab results, and generate an AI-powered clinical summary to share with their doctor – all in one place, designed specifically for the Caribbean patient experience,’ George said.
She said that SickleConnect also offers a 30-day clinical summary generated from patient data as wellas a one-tap emergency alert with location sharing, accessible at all times.
She said SCD affects an estimated one in 500 people of African or Caribbean descent and causes severe episodes of pain, organ damage, and significantly shortened life expectancy.
‘In Dominica and across the Eastern Caribbean, access to specialist haematology care remains limited, and until today, there has been no digital health tool designed for this patient population,’ said the SCCF, which provides education, advocacy, peer support, and digital health services to patients and their families across Dominica and the wider Eastern Caribbean.
World Sickle Cell Day is being observed under the theme ‘Closing the Survival Gap: Equity in Sickle Cell Disease,’ highlighting the persistent disparities in access to diagnosis, treatments, and quality care across the globe.
The Trinidad-based Caribbean Public Health Agency (CARPHA) is using the global occasion to advocate for early diagnosis, raise public awareness about sickle cell disease (SCD) as a genetic haemoglobin disorder, and promote patient support systems across the region.
CARPHA has classified SCD as one of the leading non-communicable diseases (NCDs) in the region, focusing heavily on raising awareness for a disorder that disproportionately affects populations of African and Caribbean descent.