Inherited Bleeding Disorder May Lower Risk of Thrombosis with COVID-19 Infection
1 in 5 of women with heavy periods will have an underlying bleeding disorder
Tuesday 13th April, 2021:
Von Willebrand Disorder (VWD), an inherited bleeding disorder which affects the blood’s ability to clot, may lower the risk of thrombosis with COVID-19 infection1. That’s according to the Irish Haemophilia Society which is raising awareness of VWD and its warning signs to mark World Haemophilia Day on 17th April. Since the pandemic, those with underlying health conditions have been deemed high-risk if infected with COVID-19, yet studies have revealed interesting findings with regard to those living with this bleeding disorder.
Professor James O’Donnell, Consultant Haematologist, National Coagulation Centre (NCC), St. James’s Hospital, Dublin said, “Thrombosis is the leading cause of death from COVID-19 yet, ironically, VWD may be associated with a lower than normal risk of thrombosis as a consequence of infection with COVID-19.”
VWD affects both men and women and is the most common inherited bleeding disorder with approximately 1 in 1,000 of the population being affected. In men or children, easy bruising or frequent, heavy nosebleeds may be the first sign of a bleeding disorder. The most common warning sign for women is heavy periods, and 1 in 5 of those with heavy periods will have an underlying bleeding disorder2,3,4.
Dr. Michelle Lavin, Clinical Lead for coagulation haematology research, Irish Centre for Vascular Biology, Royal College of Surgeons, Dublin said, “It is important that more people are aware of the warning signs of this disease as the lack of understanding is a major barrier to diagnosis. In women, heavy periods or excess bleeding after childbirth are the most common complaints. Unfortunately, many women may fail to appreciate they have heavy periods or their doctors may fail to consider referral for testing for VWD. 1 in 5 women will have heavy periods and, of these, 1 in 5 will have an underlying bleeding disorder.”
In VWD, the von Willebrand protein is lower than normal in the blood. Normal levels are above 50%, while in VWD, levels are below 30%. It can be difficult to tell if menstrual bleeding is heavy. Comparing yourself to other women in the family can be misleading as they, too, may also have low vWF levels or VWD without knowing it. The following should alert a woman to a potential problem:
– Bleeding which lasts longer than 7 days, requires you to change pads or menstrual cup every two hours or passing clots larger than a €1 coin
– Unpredictable bleeding
– Menstrual bleeding which affects daily activity (needing time off work / school)
Both men and women with VWD can experience prolonged or heavy bleeding after dental procedures, surgery or trauma. Any person who believes some of these signs of an underlying bleeding disorder apply to them should, in the first instance, contact their GP who will refer them for specialised testing at the National Coagulation Centre for adults or Children’s Hospital Ireland at Crumlin for Children, if needed.
Brian O’Mahony, Chief Executive, Irish Haemophilia Society said, “Von Willebrand Disorder is massively underdiagnosed in many countries, including Ireland. There are currently 1,643 people in Ireland diagnosed with VWD of whom 618 are male and 1,025 are female5. We would expect to have 4,900 diagnosed if all those with VWD were identified.”
The Irish Haemophilia Society will launch a VWD patient information booklet, series of animated and personal videos and host two webinars to mark World Haemophilia Day including:
– Wednesday, 14th April at 6pm: Webinar on ‘VWD Guidelines & Research for Diagnoses & Treatment’ with Dr. Michelle Lavin and Professor James O’Donnell.
– Monday, 19th April at 6pm: Webinar on ‘Living with VWD’, a discussion panel with Irish Haemophilia Society members Breda Queally, Barry Queally, Donal McCann and Shannon Carey
Registration for the webinars is free of charge, contact info@haemophilia.ie, and all the information materials are available from our website.
For further information, please contact:
Brian O’Mahony, Irish Haemophilia Society, brian@haemophilia.ie or 087-2515325
Notes to editors:
About the Irish Haemophilia Society:
The Irish Haemophilia Society 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 has grown from an informal and voluntary group of parents of people with haemophilia who wanted a better deal for their children, to a confident and professional charity with a committed board and professional staff to deal with the challenges ahead.
Today the Society is vigilant on safety and the availability of treatment and is thankfully maintaining a strong and united organisation. We produce various publications, organise information meetings, conferences, regional visits, home and hospital visits and updates on treatment. We have an excellent board and staff, young enthusiastic members, great volunteers and are working in a strategic and planned manner. We contribute effectively to the National Haemophilia Council, Product Selection Board and Consultative Council on Hepatitis C. We have a permanent headquarters and provide services for all categories of members. We remember those who have passed away. We remember and have learned from the tragedies which have befallen our community and we look to the future with confidence and hope.
For World Haemophilia Day 2021, the Society will focus on raising awareness and understanding of Von Willebrands Disorder (VWD).
References:
- Soracha E Ward, Gerard F Curley, Michelle Lavin et al. Von Willebrand factor propeptide in severe coronavirus disease 2019 (COVID-19): evidence of acute and sustained endothelial cell activation. Br J Haematology 2021 Feb;192(4):714-719. doi: 10.1111/bjh.17273. Epub 2020 Dec 16.
- von Willebrand disease and menorrhagia: Prevalence, diagnosis and management. Jody L Kujovich Am. J. Haematol. 2005 Jul:79(3) 222-8 doi 10.1002/ajh.20372).
- Kadir, R. A., Economides, D. L., Sabin, C. A., Owens, D. & Lee, C. A. Frequency of inherited bleeding disorders in women with menorrhagia. Lancet 351, 485–489 (1998).
- Knol, H. M. et al. The prevalence of underlying bleeding disorders in patients with heavy menstrual bleeding with and without gynecologic abnormalities. Am. J. Obstet. Gynecol. 209, 202.e1–7 (2013)
- Data from the National Registry at National Coagulation Centre, St. James Hospital. Published by World Federation of Hemophilia: Annual Global Survey 2019. www.wfh.org