The Founder and Executive Director of Purple Crystal Sickle Care Foundation, Afunmiso Titoluwani, has urged for greater attention to the prevention of sickle cell disease and the mental health of people living with the condition. Titoluwani made the call during the first edition of the foundation’s Sickle Smart Walk held in Ikeja, Lagos, as part of activities marking Sickle Cell Awareness Month. The event aimed to raise awareness and promote prevention.
Titoluwani established the foundation to change the way sickle cell disease is viewed and addressed in Nigeria. She noted that while much attention is often placed on people living with sickle cell disease and how they can access medication, there is a need to do more in the areas of prevention, genotype awareness, and mental health. The foundation has been using genotype testing and advocacy to educate Nigerians and help prevent the transmission of sickle cell disease to future generations.
The foundation has received donations from Emzor Pharmaceutical Industries and other pharmaceutical companies and brands, particularly during its sickle cell hangout held in June. Titoluwani said the Sickle Smart Walk would become an annual event every September in line with Sickle Cell Awareness Month. The event aims to promote awareness and encourage people to take action in preventing the disease.
Titoluwani encouraged people living with sickle cell disease not to allow their condition to stop them from pursuing their dreams. She believes that with proper support and awareness, the narrative surrounding sickle cell disease in Nigeria can change significantly within the next 10 years. Her mother, Mrs Oluwaremilekun Afunmiso, supported her daughter's efforts, recalling the challenges they faced while establishing the foundation.
Mrs Afunmiso encouraged people living with sickle cell disease not to lose hope, noting that the condition could affect both physical and mental wellbeing. She called on the government to increase sickle cell awareness at the grassroots, particularly by educating young people about the condition and genotype compatibility. This, she believes, can help prevent more children from being born with the condition.
Sickle cell warriors, including Chineye Gift, Ibrahim Hadiza, and Akinsanmi Emmanuel, also shared their experiences and called for better support and treatment. Gift urged Nigerians to know their genotype and understand sickle cell traits before having children, while Hadiza appealed to the government to engage healthcare workers on the condition. Emmanuel advised Nigerians to know their genotype before marriage and urged the government to support sickle cell organisations.
The stakeholders emphasized the need for improved healthcare services, particularly for students, and called on the government to make medications more affordable for people living with sickle cell disease. They also urged healthcare workers to provide better care and support to sickle cell patients. The foundation's efforts aim to promote awareness, prevention, and support for those affected by sickle cell disease.
Key points
- The Purple Crystal Sickle Care Foundation is pushing for more focus on sickle cell disease prevention and mental health support.
- The foundation's efforts include genotype testing, advocacy, and annual events to promote awareness.
- Stakeholders are calling on the government to increase awareness, support organisations, and make medications more affordable.
