Welcome to the resource page for women affected by bleeding disorders. Here, you will find additional resources from the video developed by EHC for World Haemophilia Day 2022 to raise awareness about issues faced by women and bleeding disorders.
Diana Lighezan, Haematologist in training, member of the EHC Steering Committee, Romania.
In terms of rare bleeding disorders, how important is an early and accurate diagnosis?
Willie Greevenbroek, Nurse Practitioner, The Netherlands.
What can be done to prepare a girl with bleeding disorders for her first period?
- Inform yourself about what ‘abnormal’ periods look like at the ‘Know your flow’ website.
- Consult the ‘Let’s Talk Period’ website.
- Download the ‘Blood Sisterhood’ app.
- Assess your period flow with this self-administered bleeding assessment tool.
- Try out the EHC app on novel therapies, EHCucate.
Naja Skouw-Rasmussen, Patient with Von Willebrand Disease, Denmark
What resources would you advise to a woman with bleeding disorders thinking of starting a family and becoming pregnant?
- Read about pregnancy in women with bleeding disorders—a resource from the Irish Haemophilia Society.
- Consult the European Principles of Care for Women and Girls with Bleeding Disorders. Jointly developed by the EHC and the European Association for Haemophilia and Allied Disorders (EAHAD) and published in Haemophilia, August 2021.
- Check out the advice given by the Canadian Haemophilia Society to pregnant women with bleeding disorders.
- Read the article ‘How I manage pregnancy in carriers of haemophilia and patients with Von Willebrand Disease,’ published in Blood, November 2020.
- Read about the UK Haemophilia Society ‘Talking Red’ campaign.
- Try out the EHC app on novel therapies, EHCucate.
Jim is aged 66 and has Haemophilia A with a high titer inhibitor which he developed at age 14.
Maria Elisa Mancuso (MD, PhD) is a Haematologist and works as a Senior Haematology Consultant at the Center for Thrombosis and Haemorrhagic Diseases of IRCCS Humanitas Research Hospital in Rozzano, Milan, Italy. She is Adjunct Clinical Professor at Humanitas University. She obtained a post-degree in Clinical and Experimental Haematology and a PhD in Clinical Methodology. She is involved in clinical research and has published several original articles in peer-reviewed journals a The Lancet, Blood, Journal of Thrombosis and Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of Haematology and Haemophilia. She is reviewer for several peer-reviewed journals and member of the Editorial Board of JTH. She is a member of several scientific societies (ISTH, WFH, ASH, EAHAD, SISET, AICE) and was a medical member of the Inhibitor Working Group of the European Hemophilia Consortium. She is co-chair of the ADVANCE Study Group. She has acted also as co-chair of the Scientific and Standardization Subcommittee of ISTH on FVIII, FIX and rare bleeding disorders. She has been involved as principal and co-investigator in several clinical trials, and she takes care of both children and adults with hemophilia and other congenital bleeding disorders with a specific scientific interest in novel therapies, prophylaxis, inhibitors, and chronic hepatitis C.
As a patient with factor II deficiency, the diagnostic and treatment of rare bleeding disorders is a matter dear to my heart. My motivation to participate in the work of the ERIN committee is to improve both diagnostic and treatment for patients with rare bleeding disorders across Europe.
Economist and financial expert by profession, executive coach and trainer by passion and haemophilia advocate by every drop of my blood through my son (who has severe haemophilia A with inhibitors). Bringing a good decade of practical experience from the corporate insurance world, laser focus, growth mindset and resilience from my own experience, offering you anything I can just do, in hope that together we can make life more fulfilled for those impacted by bleeding disorders.
Amy Owen-Wyard is a Registered Mental Health Nurse. With experience working with children, young people, their families and adults with severe and enduring mental health conditions. Amy was also involved in a service improvement to provide a holistic care approach for those in general hospitals to support both their mental and physical health, whilst sharing her expertise and knowledge in mental health with the wider multidisciplinary team.
