Who We Are
Sickle Cell Society Ireland (SCSI) is the Official Umbrella organisation for all sickle cell support groups in Ireland. It is a patient and parent led NGO Organisation working at local, regional, national and European Union level.
SCSI works in partnership with Sickle Cell Society UK, Pan European Sickle Cell Alliance (PESCA ), Global Sickle Disease Network (GSCDN), Worldwide Initiative on the Social Study of Haemoglobinopathies (WISSH), Unit for the Social Study of Thalassaemia and Sickle Cell at De Montfort University, UK, Irish Blood Transfusion Services and the Children’s Hospital in Crumlin.
The foundations of SCSI were laid in 2006 during a Trinity College Social Work Master’s Thesis (written by Esther Onolememen) which addressed African Parents’ Experiences of Living and Coping with Children with Sickle Cell Disease in Ireland. Esther Onolememen is currently pursuing a PhD in Public Policy addressing Health Policy implications of Sickle Cell Disorders in Ireland.
“We can tell the society has made huge impact on our GP trainee students since their involvement in delivering the EPC module where they come to tell their stories and experiences of the health care system whether negative or positive. This impact is reflected on students responses to exam questions”
— Dr. Jane Uygur, GP Lecturer, Royal College Of Surgeons
One of the key findings of her initial research was the lack of social support for people affected by sickle cell in Ireland. The study identified the key barriers faced by families, owing to the lack of community/social support and how these factors impact on their views and constructions of their children living with sickle cell in Ireland. One striking finding was how the ‘notion/myths of early death in sickle cell’ for some parents, meant that planning their children’s future was a waste. Stigma was also identified as a barrier to services.
SCSI continue to support parents on a one-to-one basis since 2006. In February 2013, under collaboration with the UK, the Sickle Cell Society of Ireland was officially launched in Dublin. SCSI work focuses on Parent Support, Advocacy, working in Partnerships with local, international and EU level support services & Creating Awareness of Sickle Cell through Educational Workshops, Conferences and Seminars.