Kinnegad woman helping Von Willebrand’s Disorder campaign

A Kinnegad woman is taking part in a new campaign aimed at raising awareness about Von Willebrand Disorder, and its diagnosis in Ireland.

Von Willebrand’s Disorder (VWD) is the most common inherited bleeding condition in which the blood does not clot properly. Despite affecting an estimated 4,900 people in Ireland, only around one third of people living with VWD have received a diagnosis.

“We have three different bleeding disorders within my family unit,” said Shannon Carey, speaking as part of ‘Finding Von Willebrand’ campaign from the Irish Haemophilia Society (IHS) in collaboration with Takeda Ireland, which shares three personal stories of how the disorder affects people.

“On my dad’s side of the family we do have haemophilia – my mam got tested and she had platelet defect,” said Shannon, who is a youth leader working at Barretstown. “So when myself and my older sister Saoirse was born, they brought us forward for testing.”

Only for the history of bleeding disorders in her family, Shannon says she may never have known she had Von Willebrand.

“I grew up in the countryside and I would often go up to my neighbours, up the road, who had a massive conker tree. I remember my younger neighbour, she grabbed a rock and threw it up at the tree, but unfortunately I got a little knock to my head.

“The cut was only about this size,” said Shannon, demonstrating with her thumb and forefinger, “It was tiny but the blood just started gushing from my head. I was only about eight years old and although it was such a small cut, it was like a horror film, the way the blood came down.”

Things become more difficult for Shannon during puberty when her menstrual cycle began.

“Every time I moved, I sneezed or coughed, or stood up, I was bleeding and it wasn’t normal, but it was my normal. I remember I would be going to summer camp and I couldn’t participate, and none of the adults knew why, because I was very scared about telling anybody about it,” she said, adding that she could never take part in any contact sports, including football or camogie.

Shannon said there is treatment and support available.

“Have your education around you, have your supports around you, and know when you go to anyone medical, say to them ‘I have Von Willebrand and this is what I can tell you about it, this is what I need you to do for me’. Type 1 VWD is under-diagnosed in Ireland, but there are medications and supports available for people to use. Just go and get tested and make sure you get diagnosed.”

You can watch a video of Shannon’s story at haemophilia.ie/finding-von-willebrand/.

A survey of 1,008 Irish adults, published and commissioned by Takeda, reveals that nose bleeds (21%), easy bruising (18%) and heavy menstrual bleeding (18%) were the most common unusual bleeding symptoms by their frequency or severity. People, however, do not always recognise excessive, frequent bleeds as symptoms of VWD, so the condition often goes undiagnosed and untreated.

Dr Michelle Lavin, consultant haematologist from the National Coagulation Centre at St James’s Hospital, said undetected VWD can result in medical complications when the increased risk of bleeding is not managed during events such as an accident, surgery or childbirth.

“Many people simply endure the symptoms on a daily basis, while worrying about their underlying cause and without knowing care is available. People experiencing severe or frequent bleeds should contact their doctor and discuss referral to a haematologist,” Dr Michelle Lavin stated.

The new Finding von Willebrand campaign has been created to shine a light on symptoms and encourage anyone experiencing them to visit their GP. The campaign also aims to engage GPs so the signs are recognised and referrals are made to one of Ireland’s bleeding disorder specialist centres.

Finding von Willebrand features three video stories from people living with VWD, Donal McCann is one of those, as men with VWD are often overlooked, yet are equally likely to inherit the condition. The patient videos depict the wide-ranging impact VWD can have on daily life including typical symptoms and supports, while Dr Lavin’s interview shares guidance on recognising and diagnosing VWD. The campaign also includes a diagnostic tool for GPs and people experiencing unusual bleeding to use to determine the best course of action they should take.

Brian O’Mahony, CEO of the Irish Haemophilia Society (IHS), said: “Because VWD is a genetic bleeding disorder, one person’s diagnosis often leads to a cluster of diagnoses within the family unit – so seeking help for VWD can benefit many people in the person’s life. Building awareness and understanding of VWD in public discourse is a crucial step towards connecting patients with the care they need.”

Margaret Drysdale, Rare Business Unit Head at Takeda Ireland, added: “At Takeda our vision is to serve the needs of our patients, and it is clear that people living with VWD face significant challenges in their path to diagnosis. To support the prompt identification of VWD, Takeda is proud to collaborate with the Irish Haemophilia Society on the Finding Von Willebrand campaign. The first-hand contributions of their members have provided fresh insight into the needs of the Irish VWD community, whom Takeda is committed to supporting.”

People experiencing repeated or a combination of bleeding symptoms, such as frequent nose bleeds, easy bruising, excessive bleeding from an injury or after dental work, or women experiencing heavy menstrual bleeding, are encouraged to speak to their GP.

• The campaign is fully funded by Takeda Ireland, a subsidiary of Takeda Pharmaceutical Company Ltd.