Top of the Bill
Born in Sneem, Co. Kerry, Bill O’Sullivan had severe haemophilia. In 1968, Bill joined four other people with haemophilia and parents in setting up The Irish Haemophilia Society. Treatment for haemophilia with factor concentrates had only just been introduced in Ireland and Bill and the other founding members recognised a need for a support organisation to help people with bleeding disorders and their families understand the changes to haemophilia care.
I was keen to find out how Bill became involved in the Society and why he felt an organisation was needed, but before that, I needed to find out what kind of a man he was. I spoke to several members who knew Bill, as well as his family and one word that everyone used to describe him was a “gentleman”. Such a simple word, with a deep meaning, but it is rare to hear people described as this. So when I spoke to Bill’s wife Hilary she elaborated on this; “People often said that about Bill, because he was a gentleman. My father said that at our wedding actually, he said Bill was a gentleman and a gentle man”.
As treatment for haemophilia only became available in the late 1960s, the life span of a person with haemophilia was short. In fact, as has been noted by the I.H.S., other National Member Organisations (NMO’s) and the World Federation of Hemophilia (WFH), it is only now that we are seeing the first ageing population of people with haemophilia. As a person with severe haemophilia, it would have been very tough for Bill growing up. Indeed, without any treatment, severe haemophilia meant missing a lot of school, which had an impact on education and job prospects. Bill went onto college himself and became an Environmental Health Inspector and then Supervisor. Promoting education and a positive view of haemophilia was something Bill was determined the Society endorse, Hilary explained:
“It was an achievement for Bill, without treatment, to have gone as far in his education as he did. He felt it was important that people coming to meetings would see people with haemophilia who were functioning well, had finished their education and were in good jobs.”
The introduction of factor concentrates was a positive step in haemophilia care for a condition that would have been viewed negatively. Changing the outlook of people with bleeding disorders and their families was something Bill was extremely passionate about. Bill wanted to put a positive point of view across and focus on what people with bleeding disorders could do, rather than their limitations;
“Although he couldn’t play sports, Bill was a supporter of the GAA and Irish music and culture. He developed other interests becoming a keen gardener with roses being a particular favourite. He also developed his skills in DIY and public speaking. After we were married, Bill took swimming lessons and found his mobility improved,”
Hilary recalls, “It was hard for boys with bleeding disorders at that time to be told they couldn’t play a sport, because they are meant to be active and running around. Bill thought it was important to emphasise what the boys could do and to develop their skills in other areas.”
Sport is a hot topic with all haemophilia organisations. It is important for people to stay fit and healthy regardless of their bleeding disorder status, but for people with haemophilia, keeping fit helps to develop strong muscles. Things have moved on since Bill’s time and there are still sports which are discouraged, but at the end of the day it will always be the individual’s choice as to how they live their life. From all accounts Bill was very disciplined when it came to his haemophilia care.
“Bill faced a lot of challenges in life, because people with haemophilia generally didn’t survive long without treatment. He realised that he needed to be careful about things and knew what he could and couldn’t do.”
Bill was very committed to his job, often to his detriment;
“I saw Bill going into work when he wouldn’t be feeling well because of a bleed, but he would rather go in and struggle through the day than take time off.”
This was and indeed is something that happens quite often and in some cases can be traced back to the issue of disclosure. People with haemophilia often feel they will be judged or viewed differently if they take time off sick because of their condition.
In Ireland, approximately 50% of new haemophilia diagnoses are spontaneous mutations. Coming to terms with a lifelong condition in your family is a test. Although there was a family history of haemophilia for Bill, Hilary says it was something he would have dealt with privately.
“He wouldn’t have spoken a lot growing up about his haemophilia, which would have been typical at that time.”
The privacy around haemophilia was not uncommon and again, can be traced back to disclosure. It was felt that if people knew about your haemophilia diagnosis, it would affect your education and job prospects. When established, the I.H.S. committee would visit members in hospitals and talk to them about their concerns and explain haemophilia care to them. At that time, there were no haemophilia treatment centres so information was hard to come by. Medical staff did not have the same level of involvement as they would have now, so people with bleeding disorders generally did not know where to find information or support. As the years passed the Society became recognised as a support organisation and began regular communication with members by establishing a mailing list.
Today, there are three haemophilia treatment centres in Ireland. The Irish Haemophilia Society regularly meet with the teams from the treatment centres to discuss haemophilia care and issues that members may have. This involvement began with the founding members who worked on improving hospital conditions for patients with bleeding disorders, as Hilary told me;
“Some beds were in the leukaemia wards. It was very difficult to be in hospital, but for people with haemophilia who were trying to get better and be positive about their situation, they were in a very difficult and emotionally painful environment. Also, children could not visit these wards.”
As well as advocacy and outreach, another contribution Bill made to the Society was involving his nephew Brian O’Mahony, who described Bill as a “persuasive man”, something I’m sure many past and current board members would describe Brian as today!
Bill was already very involved in the Society when he met Hilary in 1971. He was also a committee member of the Dublin – Kerry Association and became Chairman that year.
“I met Bill in February 1971, we got engaged that August and married in April 1972. Things moved quite fast, which was a surprise, because as you know Kerry men can be cautious!”
Hilary lists Bill’s sense of humour as one of the things that attracted her to Bill, but also his ability to stay calm and relaxed;
“He faced many things in his life, so he didn’t get stressed over the little things. He was a dedicated, loving husband and father. The combination of his sense of humour and strong Kerry roots played a key part in our family life.”
Hilary regularly attends events so is known to many members, her son Liam is the lead singer in the B Sharps, who provide the entertainment following the Gala Dinner at the AGMs and her daughters, Mary Clare and Grace, have participated in the Mini Marathon in aid of the I.H.S. November 2013 marked the 20th anniversary of Bill’s death and I was keen to know why staying involved with the Society is so important to the family;
“It was important to Bill so it is important to us that the standard and quality of blood products being used is closely monitored and is something we would consider to be of the utmost importance. The great thing is to see how far it has come, the work that has been done and the strides that have been made. Personally, I’ve always been struck by the dedication of the staff and committee, quite over and beyond the call of duty. There is a great sense of community in the Society, which is something Bill wanted to achieve. He would have been so happy and proud. We have a grandson, Denis, with haemophilia, who unfortunately Bill never got to meet, but I know he would be so chuffed to see that he is part of an organisation that is so positive and that with current treatment, managed at home by his parents, he never misses any school.”
That Bill’s family remain involved in the Society shows that the caring nature people remember so fondly in Bill is something that runs in the family. Although he is still quite young I have no doubt that Denis will be one person Brian O’Mahony will hope to “persuade” to join the board in the future and help bring the Society forward and carry on the work that his grandfather began.
In the chaos of everyday life and with the level of haemophilia care available today, it is hard to imagine what life with a bleeding disorder was like before treatment was available. The Society offers services and supports to all people with bleeding disorders and their families. Although not everyone avails of the supports available to them, I’m sure they take comfort in knowing they are there if they do.
After the AGM, several members thanked myself and the other staff for the work we do. However, none of the work we do as staff would be possible without the dedication of Bill and the other founding members as volunteers. So I would like to take this opportunity to thank him for everything he did, so much of which cannot be captured in an article, but will always be remembered in the hearts of those he helped and in the legacy he left behind.
A gentleman with an enormous amount of empathy, a persuasive man with a great sense of humour and a family man with a helping hand for those in need. I never had the pleasure of meeting Bill, but from what I have learned about him, that was certainly my loss.
Nuala McAuley December 2012