Wednesday 28 September 2016

The C factor: how a sports-mad student overcomes his 'severe' haemophilia

Sports-mad Tommy Burnell has a condition that can cause dangerous bleeds. But he tells Joy Orpen that thanks to the intervention of modern medicine, he is able to lead a pretty normal life

Joy Orpen

Published 28/03/2016 | 02:30

Thomas Burnell from Ashbourne. Photo: David Conachy
Thomas Burnell from Ashbourne. Photo: David Conachy

What does 18-year-old Tommy Burnell from Co Meath have in common with the late film star Richard Burton, the humanitarian Mother Teresa, and the brilliant but feared 13th-Century conqueror Genghis Khan? Like him, they all had, or were rumoured to have had, a potentially life-threatening blood condition known as haemophilia.

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The first indication that all was not well with Tommy's health occurred when he was just a small boy. At the time, he was holidaying with relatives outside Mallow, Co Cork. "I got a urinary tract infection and ended up needing an operation," he explains. "The operation went well, but the wound kept bleeding. So our GP referred me on to Temple Street [Children's University Hospital] in Dublin." The doctors there were so concerned, they admitted Tommy, and following numerous tests, haemophilia was diagnosed.

According to the Irish Haemophilia Society (IHS), this general term is used to describe classic haemophilia A, haemophilia B, Von Willebrand disease and a number of other, rarer, inherited blood disorders. People with haemophilia bleed for longer periods of time than those whose blood factor levels are normal. But this does not mean they bleed faster, as is sometimes thought. Most bleeding occurs internally, into the joints or muscles. The joints most affected are the knees, ankles and elbows. If left untreated, repeated bleeding may cause damage to the muscle tissue and joints. The condition is much more prevalent in males than females, who are more likely to be carriers of the defective gene. About one in 5,000 males in Ireland has this life-long condition, which responds well to modern treatments. Some of the signs of haemophilia may include multiple bruising, spontaneous bleeding, and haemorrhaging following an injury or surgery.

When Tommy was about four years old, a port was put in his arm so a prophylaxis, or measure to counteract the medical problem, could be administered. "That was easier [than injections], because my veins were so small," he explains. Five years later, that port was removed, and he began to get his essential medication by injection.

Following the initial diagnosis, Tommy was referred to the paediatric haematology department at Tallaght Hospital; that facility was eventually relocated to Our Lady's Children's Hospital, Crumlin. His condition has always been well managed, but, on occasion, things can get complicated. For example, when he was about six years old, he had his first major bleed. "At the time I was in Galway with my sister, who was competing in a GAA inter-club championship," says Tommy. "I was running around with friends when I started getting pain in my ankle." Later, he landed up in Galway University Hospital, where investigations revealed he was bleeding internally into the ankle. He was given additional clotting factor and he was soon on the mend.

Tommy says he coped well with the condition when he was a young boy, but as he grew in stature and age, and increased his participation in team sports, things became more difficult. When he was about 14, he was kicking a football around when his iliopsoas - which are muscles that stretch from the lower back to the thigh - got strained, causing a bleed. "It was very, very painful, making it extremely difficult to walk," Tommy remembers. "So I had to go back to Crumlin." Additional medication along with bed rest seemed to resolve the problem. However, a few days later, when Tommy was competing in a running race, the same muscles began to haemorrhage. This time, following treatment, he was put on crutches for three weeks and forbidden to participate in sport for six weeks. "I couldn't play football or hurling," he says. "I wasn't even allowed to do PE." This was a big blow for a boy who is mad about sport. "I used to love GAA. However, the doctors didn't like me playing contact sports, so I used to avoid telling them! But eventually, I had to give up football and hurling. It was tough, because I love team sports; I like the crack and all the banter. The social side is great." However, his doctors are much more supportive of his interest in golf, which he plays at Black Bush Golf Club in Dunshaughlin, near his home in Ashbourne. "I like golf a lot, even though it's not so active or physical," he says.

Tommy is clear that having haemophilia has never caused problems among his peers. When he did finally get around to explaining the problem to them, they were totally supportive. "They didn't make a big deal of it," he says. "In fact they used to make jokes about it, saying things like, 'Don't touch him or he'll die!'" He explains that current methods of treating haemophilia are far superior to the ones employed in times past, when contaminated blood products sometimes evaded safety checks. "Back then, some patients became infected with hepatitis C, HIV, and some even died of Aids," explains Tommy. "It looked like a good proportion of the haemophilia population was going to die out in Ireland." But nowadays, things are very different, with clotting factors being produced synthetically and not primarily from plasma. Though Tommy's haemophilia is rated "severe", he only needs to inject himself twice a week. "If I didn't take the clotting factor, I'd be more prone to bleeds," he says. All the products and equipment he needs are delivered to his home and kept at a low temperature.

Right now, he is busy preparing for the Leaving Certificate in June. He hopes to study politics and history at Maynooth University. In the meantime, he will do his utmost to highlight the good work the IHS does. "They look after their members really well," says Tommy. "A few years back, two of us were chosen to go Hungary to represent Irish people living with haemophilia. That really opened my eyes to how well we're looked after here. Some other countries are still using blood products with all the risks that using them implies. But fortunately things are much safer in Ireland."

With his health under control and in very good hands, Tommy is free to indulge his love of history and politics with the 1916 commemorations. He will more than likely be most interested in topics that relate to two of his heroes, Michael Collins and Padraig Pearse.

For more information, contact the Irish Haemophilia Society, tel: (01) 657-9900 or see haemophilia.ie

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