Sickle cell disorder (SCD) is a genetic disorder. SCD affects the red blood cells which become stiff and sticky and block passage through blood vessels, sometimes getting stuck and forming clumps. This brings on a ‘sickling crisis’ that can be very painful. It can also lead to infections and organ damage, potentially causing serious complications such as stroke or blindness.
Sickle cell disease is most common among people from Africa, India, the Caribbean, the Middle East, and the Mediterranean. Ireland has been relatively free from sickle cell until the last 15 years corrolating with an inward migration trend of families from sickle cell prone areas. SCD has become a challenge to the Irish medical system, and also to the education system – especially primary and secondary due to the lack of awareness amongst teachers and public health nurses. SCD presents a broader challenge to the sickle cell community – as they lack community support, they live with a sense of stigma and feeling of isolation.
The 2006 World Health Organization resolution commissioned all members states to develop and implemement comprehensive servies for families with sickle cell. There is an important need for creating awareness of sickle cell disorder in Ireland, and SCD services are still being delivered on an adhoc basis – with no established service for adults in transition from the children’s clinic.
Studies have shown that families with SCD live with a sense of stigma and isolation even amongst themselves. Within the Irish context, Onolememen 2008 (MSW 2008 Trinity research – unpublished) identified how disclosure can be a sensitive issue for families. The condition is seen as a secret because of the fear of being stigmatised in the community. As a result, both carers and children are left out of normal community activities. However, over the years and following previous Sickle Cell Society Ireland events, we have been successful in sensitising parents/carers about the important need of coming together as a group for the purposes of peer support. Our November 2012 project focused on a parents’ awareness raising event.