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Finding von willebrand

Around 4,900 people are affected by VWD in Ireland, yet only a third have received a diagnosis.

Have you experienced frequent or recurring bleeds that you think could be unusual?

Frequent nosebleeds, easy bruising, bleeding for longer than normal after dental work or injury and heavy prolonged periods in women could be signs of the most common inherited bleeding disorder, von Willebrand’s disorder.1

Around 4,900 people are affected by VWD in Ireland, yet only a third have received a diagnosis.2

“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.(3) Many people simply endure bleeding 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
Consultant Haematologist from the National Coagulation Centre at St. James’s Hospital

If you experience repeated symptoms or a combination of bleeding symptoms, visit your GP to learn more about your options. VWD is treatable once diagnosed.

Main symptoms to look out for:

  • Frequent nose bleeds
  • Easy bruising
  • Excessive bleeding from an injury or after dental work
  • Women experiencing heavy menstrual bleeding

Stories Of People Living With VWD

Finding von Willebrand: Donal’s story

Finding von Willebrand: Shannon’s story

Finding von Willebrand: Breda’s story

What is von Willebrand’s disorder? – An interview with bleeding disorder specialist Michelle Lavin (general public)

The following link will direct you to an external website.

To help you better understand whether current, or previous, bleeding episodes are normal or abnormal, please click here.4

Please note, this is an independent tool. The Irish Haemophilia Society will not accept responsibility for the results generated or actions required relating to the results. Please consult your healthcare professional for further information.

References

  1. 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]
  2. 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]
  3. 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
  4. Deforest M. et al, Generation and optimization of the self-administered bleeding assessment tool and its validation as a screening test for von Willebrand disease. Haemophilia. 2015 Sep;21(5):e384-8. https://doi.org/10.1111/hae.12747

Information placed on this page is not intended as a substitute for consultation with your healthcare professional.

This content is fully funded by Takeda Ireland, a subsidiary of Takeda Pharmaceutical Company Ltd. 

C-ANPROM/IE/VWD/0055

Date of Preparation: November 2022