A prominent British columnist on sickle cell anaemia has said that collaboration between Ireland and UK in the fight against the disease would help patients improve their situation.
Dr Asaah Nkohkwo, who was speaking at a Dublin conference organised by The Sickle Cell Society Ireland in partnership with The Sickle Cell Society UK, added that such teamwork would also reduce the number of hospital admissions associated with the blood disorder.
He explained that in the UK every newborn is screened for sickle cell and that help is immediately offered if the child is found to be at risk of the disease.
Dr Nkohkwo also praised the work of The Sickle Cell Society UK, for which he is currently an adviser, for its ongoing work – and said the formation of a sister society in Ireland was a very important development.
His views were shared by Dr Corrina McMahon, a consultant haematologist in the Sickle Cell and Thalassaemia Centre of Our Ladies Children Hospital in Crumlin, who urged members of The Sickle Cell Society Ireland and their supporters to continue to make “this voice” heard.
According to Dr McMahon, the disease is a worldwide problem that has only been recorded in Ireland in the last 15 years – correlating with increased immigration in that period – “but today there are over 400 children with sickle cell disease in Ireland”.
She also strongly encouraged people who may be at risk to get tested early for the disease, which she described as “silent, insidious and dangerous”.
Dr McMahon quoted figures from the United States which indicate that life expectancy for people with sickle cell anaemia has risen from just 10 years in 1970 to 50 years in 2000 due to actions taken among communities and within the health sector to combat the disease – and added that some sickle cell patients have lived up to 90 years in the UK.
She also highlighted some of the treatments that are presently available to sickle cell patients such as removal of the tonsils and adenoids, night-time oxygen therapy and antineoplastic drugs.
Esther Owuta-Pepple Onole-memen, a social worker and a public policy PhD candidate at the UCD College of Human Sciences, who is also spearheading The Sickle Cell Society Ireland, told Metro Éireann that some of the key objectives for the organisation include the “interface between the community and the health service system” and promoting “patient and public engagement via collaboration for responsive care”.
In the meantime, her organisation needs financial support. “Currently funding has been a great challenge,” she said. “Most of our projects are funded privately. However, the steering committee has been committed to seeing the projects in this area come through even if it means for us to use personal funds.”
Other speakers at the conference included Prof Simon Dyson, director of Unit for the Social Study of Thalassaemia and Sickle Cell at De Montfort University; Nigerian Ambass-ador to Ireland Felix Pwol; Tomás O’Dulaing, principal of Griffeen Valley Educate Together NS in Lucan and national chair of the Alliance Against Cutbacks in Education Special Needs Campaign Ireland; and Diane Nurse, lead national planning specialist for social inclusion at the National Social Inclusion Office of the HSE.
- Sickle Cell Awareness Day will take place on Thursday 25 April, with events at a venue to be announced.
