REMARKS BY PRESIDENT MARY McALEESE AT THE IRISH HAEMOPHELIA SOCIETY ON TUESDAY 3 NOVEMBER, 1998
REMARKS BY PRESIDENT MARY McALEESE AT THE IRISH HAEMOPHELIA SOCIETY ON TUESDAY 3 NOVEMBER, 1998
As patron of the Irish Haemophilia Society, I am particularly happy to join you this evening for this special occasion – marking, as it does, the start of a new phase in the Association’s history – and in a way the culmination of a period that has seen many challenges for the Association and, indeed, for people with haemophilia– as so clearly chronicled in the 30th Anniversary Booklet which Brian has presented to me.
A time like this is one when you reflect on where you have come from – on what has been achieved – and on the future. There is no doubt that since its inception in 1968, the Association has done much to achieve its aims of raising awareness of haemophilia - and looking to the needs and requirements of members - through working with the related professional, voluntary and statutory bodies. But it was episodes like the HIV and Hepatitis C controversies which were to really heighten awareness and, at the same time, bring increased pressure on members themselves through that link.
But to get a real measure of what you have done over the last thirty years you only have to compare the profile of haemophilia sufferers then and now. In 1968, as the booklet says, haemophilia was “a severely debilitating disease” – with people with haemophilia getting little “official” recognition – having to exist in relative isolation – and with limited employment prospects. Not only was there limited awareness amongst the general public of the condition, but the medical profession had at that time relatively little knowledge of the condition.
Today, quite a lot has changed, and there is a new and positive air of hope – as exemplified by the picture of young Ciarán Dowling on the front cover of the booklet. In a way, Ciarán is that mascot for the future of the Association – with great prospects of leading a full life – of getting a good education and taking up a career – and availing of the modern treatments that have become available to people with haemophilia.
Over the last three decades we have seen tremendous and revolutionary advances in medical treatment and in pharmacology. Scarcely a week goes by that we don’t hear of some new breakthrough in the medical field. This week, for example, we hear of success in using gene technology to “grow” a new thumb for a patient – and of the potential of this technology for the generation of replacement organs using cell tissue from the recipients themselves. The barriers that are being breached and the new horizons that are being reached give all of us hope for the future – hope that technological developments will ultimately make haemophilia easily treatable – and maybe even curable.
For the Association itself you have, as I have already said, dealt with many hurdles and obstacles over the last thirty years. The important thing is that you have been able to respond to the challenges that you have faced – and you have been willing to change to new directions as and when the need arose. That ability and flexibility has been the key factor in your success – and has ensured that you have been there when your members most needed you – to offer counselling and support and to fight their case when it was needed. This evening you can look back on what you have come through with a considerable degree of satisfaction at a job well done. Throughout those years you have seen many of your members come and go – many who were and are prepared to give all that they can for the benefit of others. By my presence here this evening I want to give recognition to all of those who have been of service to the Association – in whatever way – who have shown through their dedication and commitment to their peers and fellow members – that it is possible to make progress – to achieve what at times seems impossible – and to build on successes to reach out even further for new goals.
As we are on the threshold of a new century – and a new millennium – we are at the dawn of a new age of advancement in technology that will impact on all sectors and facets of life. You are approaching the future with a considerable degree of valuable experience – and a great deal of hope. I have no doubt that the next thirty years will transform the landscape within which you work – with new developments in treatment, care and possibly cure. I hope and pray that you can look forward to re-focussing your attention more towards advice, counselling and education on coping with haemophilia in living a fulfilled and normal life – as the treatment and management of the disease becomes easier and more readily available.
All the work that has been accomplished by the society that we are here to celebrate is built on the stories of individuals coping with a huge amount of worry – and at times possibly despair. At the human level I want to commend everyone for they way in which you have coped so well for building up this organisation – for doing the work – while at the same time coping on a personal level with a huge amount of disappointment, despair and worry.
In declaring the new offices open, I want to congratulate you on thirty years of successful work – and I wish you well in the exciting times ahead – times of hope and optimism.