‘The reality is I live with chronic pain. I have a lot of bad bleeds still. That is never going to change’

Agricultural machinery mechanic Donal McCann suffers from a rare and debilitating condition that causes blood to seep into his joints causing him extreme pain and suffering and nosebleeds that can last hours. Now the 30-year-old father of one who was terrified his daughter had inherited the condition has made it his mission to do what he can for people with von Willebrand Disorder

When most people get a nosebleed it's no big deal. The flow of blood can be staunched easily enough; the irritating little river of red soon stopped by the simple expedient of using a piece of tissue - but that's not the case with Donal McCann.

When he gets a nosebleed it's different. He knows what it is like to endure a nosebleed that can go on and on. He knows what it is like to spend hours, days even, trying to absorb the flow from such a bleed and being able to do little or nothing about it.

He is one of a group of people who has a relatively rare, inherited condition called von Willebrand Disorder (vWD). Those with vWD can suffer from far more debilitating consequences than simply irksome nosebleeds. They can be affected by bleeds into the joints, something that triggers intense pain. The type of acute, severe pain that demands hospital treatment.

"It generally works that there are 15 factors in your blood that create a clot and the von Willebrand factor is one of those but in some people that factor is missing," he explains. "It's a condition that's very smilar to haemophilia, it's just a different factor."

There are currently 1,643 people in Ireland diagnosed with vWD, 618 male, 1,025 female. It is, he insists, "a condition not a disease" but it is one, he adds, that is "massively underdiagnosed" in Ireland. The belief is that there are many others out there who suffer from the condition - but for one reason or another have not come forward.

CURRAHA

Bleeding is something the 30-year-old man, who is originally from the Curraha area, has grappled with all his life - and where there is bleeding invariably pain is not too far away.

"The blood gets into the joints and the pain threshold is probably the equivalent of breaking a bone," he explains.

"The real problem is when you have a couple of bleeds into the same joint, the blood causes a lot of damage to the cartilage. A consequence of that is that you end up with seized joints. People with bleeding disorders generally have a lot of joint replacements.

"My knees, hips, elbows and shoulders can all be affected, the bleed takes place internally into the joints and causes severe pain with limited mobility as well. You can't do anything, even sleeping on my left side can cause me pain. The pain would wake me up, then the shoulder would be hanging out of you for a couple of days with the pain. The bleeding can affect my spine also."

The night before he spoke to the Meath Chronicle Donal - who works as an agricultural machinery mechanic with his own company DMC Agri Repairs - had suffered an protracted nose bleed, one of so many he has endured throughout his life. It started at 8pm and went on until 6am the following morning.

It meant, that combined with working late, he ended up with just one hour's sleep. That's not all that unusual for people who have the condition. Sleeplessness, pain, inconvenience are all too familiar and unwanted companions.

Now Donal McCann has made it his life's mission to do what he can for people with vWD. He is driven by a passion to help people affected by the condition. He is passionate about it all because he knows only too well what those with vWD have to go through.

He doesn't want sympathy for himself. What he does want to do is to get help for those who have gone through what he has gone through. To encourage people with the condition to seek help and make their lives that little bit more comfortable in the process.

When Donal McCann was growing he couldn't do the things normal youngsters do. In fact his life was radically different to his mates. "I used to be laid up for weeks on end with my legs up in the air in colossal pain and everytime I went out to run in the schoolyard my leg or my knee or my ankle would swell up with blood.

"Not that I was any good at sports, I wasn't, but I couldn't play them even if I was good because everytime I ran I would have blood in the joints. Anytime I did proper physical work I would bleed. I'm six foot four and nearly 17 stone and just doing my work alone caused problems.

"I wouldn't have been able to go on school tours because of the risk of bleeding. Any kids' parties I ever went to, if I ever got excited at all that was it, the nose would just open up. It's like if I got stressed out out in any situation, like exams or anything like that my nose would start bleeding. It could have been bleeding on a couple of days during the week; it could be bleeding for a couple of days at a time."

HOSPITALS

He became very familiar with the inside of health clinics and hospitals. He became all too familiar - and he tried to avoid them, ultimately to the detriment of his own health.

"I never presented myself into the hospital when I did have bleeds because everytime I went in they kept me for a couple of days. That was fine when I was a child but when I got to college and starting working I couldn't lose that much time. Every time I went in with a nosebleed they would keep me in there for a couple of days. What would you rather? Stay at home bleeding or be in hospital bleeding?

"I would generally leave it until I absolutely had to go in but I knew when I went in I wasn't coming back out again for a couple of days. Basically I distanced myself from the health centres and the hospitals and I paid the price because now I have such joint damage."

The best treatment for VWD, Donal says, includes a prophylaxis which can be very expensive and hard to get. "Prophylaxis are probably the only thing that is going to work for myself and other people in my position across Ireland, that means treatment three or four times a week but at the moment in Ireland the treatment for vWD is very hard to get.

"One of the difficulties is that there are very, very few people around the country that have the same bleeding pattern and it's certainly not just confined to men. There are a lot of women who have terrible, terrible bleeding as well."

Two years ago Donal's daughter - Darcy - was born and he says he was "petrified" that she would inherit vWD. To his great relief, that has not turned out to be the case. Tests confirming that she didn't have vWD were carried out relatively quickly. Others with the conditions have had to wait much longer to have similar tests and this is something Donal is campaigning hard to change. All tests, he says, should be done ASAP to calm and soothe the concerns of parents. It's an issue high on his agenda.

Donal has spent countless hours fighting the good fight for people with vWD. He is an executive board member of the Irish Haemophilia Society. He's also a board member for the European von Willebrand Support Group.

He is passionate about highlighting the difficulties people with vWD face and changing the perceptions about the condition. Part of his mission includes highlighting how some types of vWD are as serious and debilitating as any bleeding condition.

Having vWD has, he thinks, shaped his personality too. "I have always being a leader, wherever I worked I was manager or foreman. I suppose the condition has given me the power to push myself forward and make changes be they in the bleeding disorder community or in my personal life running my company for example. The reality is I live with chronic pain. I have a lot of bad bleeds still. That is never going to change."

Now Donal McCann is looking to improve the lot of those who, like him, have suffered with a condition few outside the "bleeding disorder community" even heard about. The mission continues. Ever onwards.