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Sickle Gene Action Foundation (SGAF) launched in combat Sickle Cell Disease

December 1, 2023
Sickle Gene Action Foundation

The Sickle Gene Action Foundation (SGAF), a newly established advocacy group focused on addressing the challenges of Sickle Cell Disease (SCD) in Ghana, was officially launched in .

The launch event emphasized the need for collective action from society to combat the genetic condition that affects many lives in the country.

One of the primary goals of SGAF is to advocate for legislative measures that ensure the widespread accessibility of SCD medications, such as Hydroxyurea, and treatment guidelines across Ghana.

Hydroxyurea is recognized as a key medication in the management of severe SCD. The organization aims to collaborate with the government and various stakeholders to develop solutions for the obstacles hindering the effective treatment and management of SCD.

Sickle Cell Disease is a genetic condition present at birth, inherited when a child receives two genes coding for abnormal haemoglobin, one from each parent.

Ms. Victoria Awo Twumasi, Executive Director of SGAF, stressed the critical role of early diagnosis, early access to affordable treatment, and public health awareness in the prompt management of the condition.

In her address, Ms. Awo Twumasi outlined the proactive strategies needed to address the challenges associated with SCD treatment and management.

She called for stakeholder engagements, and public health interventions like counselling, and emphasized the importance of driving national awareness to combat SCD effectively.

Dr. Yvonne Brew, a Pediatrician from the Child Health Department at the Greater Accra Regional Hospital (GARH), emphasized the importance of newborn screening for SCD.

Early detection through screening allows for early treatment, significantly impacting the survival rates of affected children.

Dr Brew urged the government and stakeholders to make screening and Hydroxyurea accessible for newborn babies across all healthcare facilities.

Madam Mary Lamptey, the National Nurse Coordinator for Newborn Screening, highlighted the simplicity of the newborn screening process and encouraged parents to allow their children to undergo the screening.

She paid tribute to the late Prof. Ohene-Frempong, who initiated newborn screening for SCD in Ghana in 1992, and called on the government to allocate funds for the continuation of this critical initiative.

Sickle Cell Disease is a group of inherited red blood cell disorders affecting the structure and function of haemoglobin.

The abnormal haemoglobin causes red blood cells to become hard and sticky, resulting in various complications, including pain, infections, acute chest syndrome, and stroke.

While the disease is incurable, medical management can successfully allow patients to lead healthy lives.

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