Haemophilia Through The Generations

DVD: Haemophilia through the generations

When planning the Irish Haemophilia Society Members conference which was held in October 2006, we decided to organise a session which would allow participants to hear about the reality of growing up with haemophilia in different decades. It is gratifying that children who are on prophylaxis and who have always known only prophylactic therapy for haemophilia have no concept or idea of the reality of living with on demand treatment, inadequate treatment or no treatment. For them, the past truly is a different country and a different reality. This is as it should be, however we believed it would be very beneficial for all concerned if they had an increased understanding and appreciation of what the reality was of living with haemophilia in the past. This would perhaps assist them in contextualising their own haemophilia, and in realising that whatever problems they may have they are fortunate to be treated in the current decade and not in the past.

The session at the October Members Weekend in 2006 was a remarkable one. Gerard O’Reilly spoke about growing up with haemophilia in the 1960’s, Declan Noone spoke about growing up with haemophilia in the 1980’s, Kevin Birkett and Mary Hanney spoke about treating their children in the current decade, and Michael Loughnane bridged the generations by speaking about his reminiscences of his son Vincent growing up with haemophilia in the 1960’s, and the difference now in seeing his grandson who is 16 and also has severe haemophilia. Following the conference we received a lot of feedback from members who had been in attendance saying that they really had enjoyed this session. It was also clear that doctors and nurses who are currently treating haemophilia, especially new doctors and nurses coming into this field of thrombosis and haemostasis, would benefit from hearing the stories. Therefore we produced a DVD called ‘Haemophilia through the Generations’. If you would like to see this DVD, please contact the office on 01 657 9900 and a copy can be posted out to you.