By: Síofra Grant
A young Kinnegad woman is amongst a small group of people in Ireland living with a condition that has always been under-diagnosed but which means that even the smallest scrape can result in heavy blood loss.
Shannon Carey (21) got her first diagnosis when she was one year old – however, she didn’t get a full diagnosis until she was seven. “I was always full of bruises, even the lightest tap could cause a bruise,” she says, and this is a common symptom with children with Von Willebrand Disorder (VWD).
“One time I got a small cut and it was like a scene from the movie Carrie,” she says, due to the amount of blood running down her face. For people with VWD, blood doesn’t clot due to a lack of the Von Willebrand factor; this leads to a lot more blood even from the smallest of scrapes.
Like many of the estimated 1,025 women with VWD – 618 males have been similarly diagnosed in Ireland – she had extremely heavy periods and had to go on birth control aged 11 to manage it. For Shannon, periods were the worst part of VWD and her condition caused them to last up to 10 days. That affected her social life. According to Shannon, “I couldn’t fully participate.”
This is an extremely common symptom for women with VWD and part of the reason it goes unnoticed is that many women believe these heavy periods are normal for them. “I spread my story and realised it happens a lot with women,” says Shannon, “‘its 100% normalised.”
This lack of awareness is why Shannon feels its so important that people hear her story; she makes sure people are informed through conferences with the Irish Haemophilia Society (IHS).
Shannon is not the only person in her family with a blood disorder – her mother and a sister have a platelet disorder while her father’s side of the family has haemophilia. Miss Carey considers herself extremely lucky to have a family that understands what she’s going through: “I had these horrible symptoms and I was lucky my mam didn’t have any stigma around me using birth control,” which serves as a sort of treatment for Shannon’s VWD and has helped her a lot over the past few years, including to help lessen the secondary symptoms that stemmed from VWD such as anaemia which she struggled with during her teen years. Blood disorders, while often mild, can still be extremely dangerous and disorders like VWD can be a health hazard for those who are aware of them and even more so for those who are undiagnosed, according to Lucy Brennan of the IHS: “People with VWD can experience prolonged or heavy bleeding after dental procedures, surgery, trauma or childbirth in women.”
Shannon’s sister went through a traumatic ordeal when giving birth four years ago. She haemorrhaged so badly she almost died. “She ended up needing two blood transfusions,” says Shannon. Luckily she was aware of her condition beforehand. These dangers are the reason why the IHS hopes to bring awareness of disorders like VWD.
Shannon has met many people with her condition over the years who are going through the same thing and she is now a member of the EHC (European Haemophiliac Consortium) and has been accepted to be a part of the European Von Willebrand Platform.
She is helping to create navigation programs for those living with VWD and helping develop navigation systems for healthcare that will serve as treatment for this condition.
To those recently diagnosed or who may think they might have it, Shannon says, “it’s not as scary as people might think, there are times when you are older when it can be scary but that’s why its so important to get diagnosed”.
If you think you may have symptoms of the condition or of any blood disorder, “go to your GP and get diagnosed!” says Shannon.
