New research reveals that more than half of people have experienced an unusual bleeding symptom, as campaign launches to improve diagnosis. Finding Von Willebrand shares the experiences of people living with von Willebrand’s disorder to raise awareness of the condition and support diagnosis in Ireland
Dublin, 28th November 2022: Finding von Willebrand, a new campaign from the Irish Haemophilia Society (IHS) in collaboration with Takeda Ireland, launches today to raise awareness about von Willebrand Disorder (VWD) and support its diagnosis in Ireland. The need to support people seeking help for unusual bleeding symptoms is underlined by new research which found that among 54% of respondents who reported experiencing an unusual bleeding symptom, just half claim to have contacted their doctor, while 20% did not take any action.1
Von Willebrand’s Disorder (VWD) is the most common inherited bleeding condition in which the blood does not clot properly.2 Despite affecting an estimated 4,900 people in Ireland, only around one third of people living with VWD have received a diagnosis.3 A survey of 1,008 Irish adults, published today 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.1
People do not always recognise excessive, frequent bleeds as symptoms of VWD, so the condition often goes undiagnosed and untreated. However, once diagnosed, VWD is treatable.
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.4 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.”
The new Finding von Willebrand campaign has been created to shine a light on VWD 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.
Due to the nature of bleeding disorders, men with VWD are often overlooked, yet are equally likely to inherit VWD. Donal McCann, who was first treated for VWD as an infant said, “Growing up with VWD, I missed many schooldays due to my symptoms and my social life was often curtailed. Having a diagnosis and access to care gives me the power to manage my bleeds now. It is essential for people experiencing symptoms to visit their doctor and for their doctors to refer for diagnosis.”
Finding von Willebrand features three video stories from people living with VWD, brought to life with animation, and one video interview with Dr. Lavin. 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, “The Irish Haemophilia Society is delighted to support and participate actively in this campaign, which we hope will lead to many more people in Ireland unravelling the mystery of their unusual bleeding. 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, said, “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,5 are encouraged to speak to their GP.
The Finding von Willebrand campaign is available online at Finding von willebrand – Irish Haemophilia Society
To support the campaign online, use the hashtag #FindingVonWillebrand
This campaign is fully funded by Takeda Ireland, a subsidiary of Takeda Pharmaceutical Company Ltd.
For further information please contact:
Stephen O’Farrell, Wilson Hartnell – T: +353 83 093 8311, E: firstname.lastname@example.org
Aoife Callan, Takeda Ireland – T: +353 87 3651007, E: email@example.com
Brian O’Mahony, Irish Haemophilia Society – T: +353 87 2515325 E: firstname.lastname@example.org
About Von Willebrand’s Disorder
VWD is the most common inherited bleeding condition, it is estimated to affect approximately 4,900 people in Ireland.3 and up to 1% of the world’s population.6 VWD is caused by a deficiency or dysfunction of von Willebrand factor (VWF), one of several types of proteins in the blood that are needed to facilitate proper blood clotting. Due to this defect or deficiency in VWF, blood is not able to clot effectively in people with VWD which may result in heavy menstrual periods, easy bruising, or frequent nose bleeds. Bleeding caused by VWD varies greatly among patients with this disease.
About Irish Haemophilia Society
The Irish Haemophilia Society (IHS) represents people living with haemophilia, von Willebrand’s disorder and all other inherited bleeding disorders. The IHS was founded in 1968 by members of the medical profession, people with haemophilia, their families and friends who felt the need to provide support and advice for members and to improve the quality of life for people with haemophilia. The society produces various publications, organises information meetings, conferences, regional visits, home and hospital visits as well as providing information on treatments. The IHS also contributes to the National Haemophilia Council, Product Selection Board and Consultative Council on Hepatitis C.
For more information, visit https://haemophilia.ie/
About Takeda Pharmaceutical Company
Takeda Pharmaceutical Company Limited (TSE: 4502/NYSE: TAK) is a global, values-based, R&D-driven biopharmaceutical leader headquartered in Japan, committed to discover and deliver life-transforming treatments, guided by our commitment to patients, our people and the planet. Takeda focuses its R&D efforts on four therapeutic areas: Oncology, Rare Genetics and Hematology, Neuroscience, and Gastroenterology (GI). We also make targeted R&D investments in Plasma-Derived Therapies and Vaccines. We are focusing on developing highly innovative medicines that contribute to making a difference in people’s lives by advancing the frontier of new treatment options and leveraging our enhanced collaborative R&D engine and capabilities to create a robust, modality-diverse pipeline. Our employees are committed to improving quality of life for patients and to working with our partners in health care in approximately 80 countries and regions.
For more information, visit https://www.takeda.com/en-ie
- Empathy Research Ltd. Bleeding Disorders Research Results. (2022) [Data on File]
- Centers for Disease Control and Prevention, What is von Willebrand Disease? (2021) Available at: https://www.cdc.gov/ncbddd/vwd/facts.html [Accessed November 2022]
- Clinical News. New global clinical guidelines launched for von Willebrand disorder, The Medical Independent (2021) Available at: https://www.medicalindependent.ie/clinical-news/new-global-clinical-guidelines-launched-for-von-willebrand-disorder [Accessed November 2022]
- Colonne C.K. et al, Why is Misdiagnosis of von Willebrand Disease Still Prevalent and How Can We Overcome It? A Focus on Clinical Considerations and Recommendations. Journal of Blood Medicine. 2021; 17(12):755-768. https://www.doi.org/10.2147/JBM.S266791
- Mayo Clinic. Von Willebrand disease. (2021) Available at: https://www.mayoclinic.org/diseases-conditions/von-willebrand-disease/symptoms-causes/syc-20354978 [Accessed November 2022]
- Lillicrap D., James P. Von Willebrand Disease: An Introduction for the Primary Care Physician. World Federation of Hemophilia. (2009) Available at: https://www1.wfh.org/publication/files/pdf-1204.pdf [Accessed November 2022]