'I'm a bit more cautious now'

When Barry Queally was diagnosed with a rare bleeding condition at age six, his only ambition was to play hurling and football for Cork.

That dream was made almost impossible due to Von Willebrand disease (VWD), a lifelong hereditary disorder which affects the blood’s ability to clot.

To raise awareness around this rare condition, Barry has joined with the Irish Haemophilia Society (IHS) for a national awareness campaign.

As a result of his mother’s symptoms, the Ballincollig native was diagnosed in 1980 when very little was known about the disorder. “Once I was diagnosed it made sense as to why I would have more bruising than my brother who is negative. If I got cut, I would bleed for far, far longer. In my youth I always tended to leap before I looked. I'm a bit more cautious now,” Barry told the Cork Independent.

After his diagnosis, Barry was told he would have to take precautions and could no longer participate in contact sports. “I'm from a bit of a sports-mad family so I kind of just ignored it. I was obsessed with the idea of playing football and hurling and I continued to play until U21 level,” said Barry.

Barry, who is now 41, said it was only when he stopped playing contact sports that he realised how much continuous and chronic pain he was in during his teen years.

“I was always in constant pain. It was only when I went into non-contact activities in my twenties that I realised, 'Oh, maybe this is how everybody else feels',” he said.

Now working as an audio visual technician at MCU Cork School of Music, Barry has two young children who have both been diagnosed with Von Willebrand disease.

“We've had a couple of accidents with our little boy Mikey. Whenever I see blood, I go into action mode because there's no time to waste,” he said.

Last summer, at the height of the first lockdown, Mikey required dental work including extractions.

“There was a huge amount of coordination needed involving three hospitals. Getting blood treatment in one hospital, then moving to another hospital by ambulance that had an operating theatre open, and then a dentist from a third hospital had to come. All that had to take place in the space of one hour so that the blood treatment was at maximum effect,” said Barry.

In late 2016, Barry required a hospital visit of his own when he slipped one morning in the city and broke his wrist.

Having called the emergency services, Barry proceeded to inform every medical professional he spoke with along the way that he would need special care upon arrival at the hospital.

“It's one of those things that can happen to anybody, but it was what happened next really is where Von Willebrand Disorder stepped in. I told them that the appropriate treatment needs to be available when I get in or I'm going to have complications,” said Barry.

Despite his efforts and due to a lack of awareness surrounding his condition, Barry did not receive blood treatment until the following Monday morning, close to 72 hours after his accident.

“I spent the whole weekend essentially internally bleeding in my wrist. That is unfortunately a reality with this condition. I was still in significant amounts of pain for up to three years after the accident,” he said.

Barry keeps medication that helps with blood clotting on him at all times in case of injury as well as a number of cards with contact details and bleeding alert signs.

There are currently 1,643 people in Ireland diagnosed with VWD of whom 618 are male and 1,025 are female.

The IHS expects this number to be 4,900 diagnosed if all those with VWD were identified in Ireland.

The warning signs for men or children are easy bruising or frequent, heavy nosebleeds. For women, the most common warning sign is heavy periods.

For more information on Von Willebrand disease and the awareness campaign, visit haemophilia.ie.