A non-governmental organisation, Purple Crystal SickleCare Foundation (PCSCF), has joined global campaigns to mark this year’s World Sickle Cell Day, calling for concerted efforts to scale up investment in sickle cell care.
The foundation also seeks to strengthen community-based support systems that help reduce stigma and improve access to treatment for sickle cell warriors across the country.
Speaking at a hangout organised by the foundation, where it hosted various warriors in Lagos, with the theme “A Break From Sickle Cell”, a sickle cell warrior and founder of the Purple Crystal SickleCare Foundation, Titoluwani Afunmiso, said the event was created to remind warriors that life is more than their health struggles and warriors could still live the best life even with their condition.
Afunmiso, who called for more awareness on genotype testing, better healthcare support and stronger policies to improve the lives of people living with sickle cell disorder in Nigeria, said it is imperative to create a space for warriors to relax, feel seen, heard, and supported.
She said, “The hangout was organised to give people living with sickle cell a chance to take a break from the daily stress, hospital visits and pain that often come with the condition. People living with sickle cell go through a lot, from physical pain and emotional stress to sometimes loneliness. This hangout is to give them a break, a chance to feel free and feel loved.”
She noted that World Sickle Cell Day should not only focus on creating awareness about the illness but also highlight the emotional and mental challenges warriors face every day, noting that many sickle cell warriors struggle in silence, dealing with stigma, health challenges and financial pressure, adding that support from family, society and government is very important.
“The foundation runs a monthly support group every third Saturday at the Lagos State University Teaching Hospital, which is done in partnership with the hospital to provide a safe space for people living with sickle cell disorder to share their experiences, receive guidance, and find encouragement from others going through similar challenges,” she added
The foundation further encouraged continued support for sickle cell warriors, stressing that consistent care, awareness, and community engagement are key to improving their quality of life beyond special awareness days.
Some of the participants applauded the initiative, describing it as a life-saving gesture which would go a long way to improve their well-being.
The event featured games, networking, free routine medications for warriors, gift presentations, and other fun-filled moments reaffirming the foundation’s commitment to people living with sickle cell.
