‘Sickle patients need information about disease’
The founder of the Ghana Sickle Cell Foundation, Professor Kweku Ohene-Frempong, has advised parents and caregivers to empower children suffering from sickle cell with knowledge about the disease to enable them to live long.
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Prof. Ohene-Frempong said some parents did not show interest in their children suffering from the disease, thinking that they might die before completing their education.
He made the call at an event held in Cape Coast to mark this year’s World Sickle Cell Day.
The celebration, which was attended by various sickle cell groups from Accra; Kumasi, Sunyani, Brekum, Koforidua; Ho, and Tema, was on the theme: “Empowering individuals with sickle cell to live life to the full.”
The participants marched through some principal streets of Cape Coast carrying placards, some of which read: “Understand patients when in crisis”, “Sickle cell patients can live long”, “Don’t deny sickle cell person employment”; and “We need government support”.
In 2008, the United Nations General Assembly set aside June 19 to mark the world sickle cell day.
Symptoms of the disease include jaundice, anaemia, and pain in the chest, bones, joints and abdomen. Other symptoms include stroke, chronic leg ulcers and repeated infections.
Prof. Ohene-Frempong said the country needed about 40 sickle cell clinics to be able to start a nationwide newborn screening exercise, and added that the country needed to adopt proactive measures in managing the impact of the disease.
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Prof. Ohene-Frempong said sickle cell disease had killed some children without their parents knowing the cause of death and so attributed the cause to malaria.
The President of the Ghana Association of Sickle Cell, Mr Peter Mensah, said most sickle cell patients died as a result of stigmatisation from the public.
He said the impact of the disease could be minimised if the country put in place well-structured interventions.
He said it was important for the public to know and understand the sickle cell disease to enable them to help those who had the disease.
He encouraged people with the disease to not look down on themselves, but strive hard to achieve their dreams.
Meanwhile, a nine-member interim executive board was inaugurated to mark the commencement of the operation of the Central Regional Sickle Cell association.
The executive members included the President, Mr Adams Saeed Kofi; Vice-President Mr Emmanuel Kodwo Fynn; secretary Edward Adu Larbi; with Nana Aso Abrokwa being his deputy. Ms Elizabeth Aboagye and Ms Lydia Opoku are treasurer and porter respectively.
They were advised to work to improve the welfare of people with the disease.