Originally published in The Irish Times on May 25, 2021 – Read it in full here.
A clotting disorder means Shannon Carey suffers from regular bruising and heavy bleeding
Having a nosebleed is not pleasant, but, thankfully, for most of us, it is not a regular occurrence. However, Shannon Carey has endured them, and other instances of heavy bleeding, her entire life as she has a condition called Von Willebrand Disorder (VWD), which affects the blood’s ability to clot.
“I was first diagnosed with VWD as a baby, but didn’t receive a full diagnosis until I was about seven due to the levels of it changing,” says the 21-year-old student. “I was diagnosed initially because when my older sister Aoife was a young child, she had bruising on her back which didn’t seem normal and, after investigation, she was diagnosed with Platelet Defect Disorder, which is another blood disorder.
“My mam thought she had inherited it from my dad’s side as a few members of the family have haemophilia, but the doctor said this couldn’t be the case as genetics didn’t work that way.”
Whenever I bumped into anything, there was likely to be a bruise there the next time I would look down
Due to her sister’s condition, Shannon, who lives in Westmeath with her mother Joan, was tested and eventually diagnosed with VWD and says, although she wasn’t particularly accident prone as a child, she bruised very easily and would bleed regularly.
“Before puberty, having VWD meant that whenever I bumped into anything, there was likely to be a bruise there the next time I would look down,” she says. “And I remember one time I was sleeping in my sister’s bed and I woke up while having a nosebleed. It was so bad that the bed was drenched in blood. I couldn’t remember hitting it off anything or banging it, so it must have been a spontaneous nosebleed.
“Because of VWD, any accidents I had would be a lot scarier than normal as there would be much more blood than would normally be expected. Once, while I was with the neighbour’s kids, a rock was accidentally thrown at my head when we were trying to get a conker down from a tree. It looked like a scene from the movie Carrie, as I was drenched in blood, but luckily we were able to stop the bleeding without me having to go to hospital.”
The full-time student in Athlone Institute of Technology, studying social care practice, says life became a lot more difficult when she hit puberty as the blood condition really affected menstruation and caused very heavy bleeding.
“Once puberty hit, my periods became the worst symptom of VWD,” she says. “I used to go to summer camps when I was a kid and I remember at the age of 11 barely being able to do the activities because I was bleeding so heavily. I felt that every time I moved there was more blood. So, this meant that at the age of 11, I was put on my first kind of birth control.
“I feel lucky that I was allowed to take it as there is still a stigma surrounding the taking of birth control by girls and some women. But throughout the years, getting it right has been a matter of experimenting with different kinds of birth control to see what would work best for me. One kind made me sick all the time and another type was dispensed through a patch which didn’t really control my periods.
“The one that seemed to help me the best was Nexplanon, which comes in the form of a bar which is inserted into the arm for three years. I got that put in about two years ago and it now means that I don’t have any periods at all.”
Heavy periods should never be normalised
Along with the cessation of excessive monthly bleeding, Shannon has experienced another positive outcome of being on the contraceptive pill. “The pill has also eliminated a secondary symptom which was anaemia as due to me having blood loss for up to 10 days [during her period], it meant that I became anaemic which made me feel super tired and lethargic for most of the time,” she says. “This then affected my schoolwork as when you are tired, it is difficult to concentrate.
“So these days, I feel better than I have felt since my periods started. I am no longer anaemic and have been concentrating on my studies while trying to advocate for people to get diagnosed with bleeding disorders as many people don’t even realise that they might have one, especially when family members may have the exact same symptoms such as heavy bleeding during their periods.
“When you are a young girl and get your period for the first time, you go to your sisters or your mam for advice and if anyone in the family says it is normal because ‘we are all heavy bleeders’, the condition gets normalised.”
So, the Westmeath woman would encourage anyone who has concerns about bleeding, particularly around menstruation, to talk to their doctor to see if they may have a blood disorder.
“Heavy periods should never be normalised,” she says. “I think people should get in contact with their doctor to say they want to be tested for a bleeding condition such as Von Willebrand Disorder. And, on top of that, they should check out Knowyourflow.ie to see if they may have any of the symptoms for a bleeding disorder.”
Indeed, Brian O’Mahony, chief executive of the Irish Haemophilia Society, says many people have VWD without realising it. “Von Willebrand Disorder is the most common inherited bleeding disorder, but it is massively underdiagnosed,” he says. “Only one in three Irish people with VWD have been diagnosed and it affects both men and women. Symptoms may include easy bruising and frequent nosebleeds or excessive bleeding after dental care.
“In girls and women, heavy menstrual bleeding and excessive bleeding after childbirth are common. One in five women and girls suffer from heavy menstrual bleeding and one in five of those may have an underlying bleeding disorder such as VWD. If your period lasts for more than seven days, if you have to change pads more than every two hours or if you pass clots larger than a €1 coin, you may have heavy menstrual bleeding. So ask your GP if you need to be referred for specialised testing.
“The Irish Haemophilia Society is committed to providing services, support and education to people with Von Willebrand Disorder. We are also committed to increasing awareness.”
About VWD
Von Willebrand Disorder (VWD) is an inherited bleeding disorder which affects the blood’s ability to clot
There are 1,643 people in Ireland diagnosed with VWD of whom 618 are male and 1,025 are female
It is estimated that many people have the condition, but it is undiagnosed
VWD affects both men and women and is the most common inherited bleeding disorder with about one in 1,000 of the population being affected
Heavy and prolonged menstrual bleeding could be a sign of VWD in women
Possible early signs in men and children include frequent bruising and recurrent nosebleeds