Donal McCann was eight months old when he suffered a bad nosebleed. It lasted a day and a half before his mother brought him to the local doctor.
“The doctor told my mother not to worry, that it was likely just a nosebleed and if it continued until the next day to call back for a referral, which is exactly what happened,” says Donal.
“After admission, I was in the hospital for 18 hours before I was given a treatment that worked.”
But that wasn’t the end of it and Donal spent a week in the hospital, as he suffered more break-out bleeds and also pneumonia. It wasn’t until a year after this difficult week, after numerous hospital visits and tests, that the infant Donal got a diagnosis of von Willebrand Disorder (VWD), an inherited bleeding disorder more common than haemophilia.
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“It is still difficult for parents to get their children diagnosed and sent for the right tests,” says Donal, who is aware of a family waiting 15 months to get a test result for VWD in 2020.
For some, a nosebleed is not particularly worthy of concern. For those with VWD, a simple nosebleed, a sharp cut, or injury could cause uncontrollable, life-threatening bleeding. Despite affecting approximately 4,900 people in Ireland, only one third of people living with VWD have been diagnosed.
According to the Irish Haemophilia Society, left undetected, VWD can cause complications when bleeding is unmanaged during events such as accidents, surgeries, or high-risk pregnancies.
Worryingly, new research reveals that among 54 per cent of respondents who reported experiencing an unusual bleeding symptom, just half claim to have contacted their doctor, while 20 per cent did not take any action.
“Unfortunately, the majority of people who are living with von Willebrand disorder are not currently diagnosed,” says Dr Michelle Lavin, consultant haematologist at the National Coagulation Centre, St James’s Hospital.
“It’s important to know about von Willebrand disorder, not only to help any bleeding symptoms you may have now, but also to prevent bleeding in the future with surgery, procedures, dental work, or childbirth. These are all times in which you can experience excessive or profuse bleeding if you have von Willebrand disorder.”
People with von Willebrand disease often will have lifelong easy bruising which may be larger than your palm, heavy nosebleeds lasting longer than 10 minutes, excessive bleeding with procedures or dental work or from your gut.
In women, the most common symptom is heavy or prolonged periods, lasting longer than seven days or needing frequent changing of pads or tampons.
“Every time I lost a tooth from the stage it started to get loose, I would bleed from my gums,” says Donal.
VWD has affected his life in ways most could never imagine.
“I couldn’t play any sports or hard-wearing physical activities as I’d get a lot of joint bleeds and a lot of muscle bleeds,” he says.
“I missed a lot of time from school because of that. I had many spontaneous stomach bleeds as well. As a child, just running around and jumping out of trees, I was constantly laid up from normal day-to-day children’s activities. My joints would be swollen, full of blood.”
Muscle bleeds took their toll on Donal who couldn’t go on school tours because he would get heavy nosebleeds when he got excited. Being nervous before exams or excited as a child at Christmas, as blood pressure rose, could trigger a bleed.
“The trouble was I’d have a nosebleed, then my throat would be raw for a few days, so I’d get a throat infection and then a chest infection,” says Donal.
“I have memories of choking on clots, waking up with a mouth full of blood, a sick stomach, vomiting from all the blood that had travelled down into my stomach during the night.”
Approaching the conversation and discussing a hereditary bleeding disorder is a difficult thing, says Donal
“It’s a difficult thing to tell people. I’d try to explain about blood disease and straight away they’d think it was infectious or contagious. That’s why I hate the word ‘disease’ and use the word ‘disorder’. There’s a stigma associated with the word ‘disease’. The Irish Haemophilia Society uses ‘disorder’ due to the stigma with the word ‘disease’ and the fear people have that it’s transmissible.”
Using home treatment, Donal can administer medication when he needs it in the comfort of his own home or in the security of privacy when out.
“If I’m going away on a stag do or away for the weekend, I take it with me,” he says. “I’ve these little vessels on the side of my nose that are very prone to bleeding. I’ve two little red marks on the outside of each of my nostrils that just suddenly bleed. Even a nick from shaving can cause a bleed that lasts a whole day without treatment.”
Treatment has made a massive difference to Donal’s life.
“VWD comes in different subtypes so what works for me might not work for another person, that’s why getting an official diagnosis from a haematologist is so important,” he says.
The Irish Haemophilia Society represents people living with haemophilia, von Willebrand disease and other inherited bleeding disorders in Ireland.
The society produces various publications, organises information meetings, conferences, regional visits, home, and hospital visits as well as providing information on treatments. As part of the Finding von Willebrand campaign, the Irish Haemophilia Society has established a dedicated webpage on their website for those concerned.
Part of the problem with diagnosing VWD is recognising that there is an issue in the first place.
“People do not always recognise excessive, frequent bleeds as symptoms of an underlying bleeding disorder, so the condition often goes undiagnosed and untreated,” says Dr Lavin.
“However, once diagnosed, VWD is treatable. Many people simply live with their untreated symptoms not knowing that support and care is available.”
As an inherited disease, VWD often runs in families so requesting tests and a diagnosis is often as a result of a family member with the condition or similar bleeding. In contrast, bleeding can seem to be the norm if family members are affected in the same way but without a diagnosis
. According to Dr Lavin, both males and females are affected equally but women tend to have more problems due to the heavy bleeding with periods.
“It is essential that we have more open conversations about bleeding in society,” says Dr Lavin, “especially heavy menstrual bleeding, so that people can recognise if they are bleeding too heavily.”
For people who are experiencing a combination of the above symptoms or repeated bleeding issues, they should speak to their GP and request a referral to a haematologist.
