Many of our readers will know Ena Lynn from her work with the Health Research Board. For those of you that don’t, Ena has had the extraordinary job of collecting clinical data and samples from cleft affected families all over Ireland. When she started three years ago, there were 112 samples (collected with the help of the Association). Thankfully at the time there were enough samples to help researchers secure a fund for further work.
Ena has attended all cleft clinics in Dublin & Sligo over the past three years. In the last year she also attended all Mr McKiernan’s orthodontic clinics. Almost everybody currently in treatment has contributed to the research. The total number of samples collected has reached in excess of 1000.
We caught up with Ena in the Autumn and asked her for her thoughts. The thing she liked most about her work was meeting people. She met families before operations and saw them again afterwards. She was able to witness first hand amazing results of treatment. One of the unexpected bonuses of Ena’s attendance at clinics was that she was able to spend time chatting with families and listening to their stories. The recurring theme with new parents was the gap in information etc in parts of the country where cleft co-ordinators don’t reach. The other thing Ena noticed was the difficulty teenagers go through. There is no psychology help for dealing with the impact of cleft. On the plus side parents, particularly of older children, are agreed that the system overall has improved. Asked about the role of the Association, Ena could see that there is still a strong need for the Association to provide an advocacy role in dealing with issues. Also the web site is an excellent source of information.
Overall it has been a great experience and Ena has made some great friends. She will miss the families and medical staff that she has got to know over the years. We wish Ena well with her new appointment.