In 2011, the Society organised two information days for Women and Bleeding Disorders. The first was on Saturday 16th April in Rochestown Park Hotel in Cork, and the second was on World Haemophilia Day Sunday 17th April in the Hilton Hotel in Kilmainham in Dublin
Professor John Bonnar, Chairperson of the National Haemophilia Council kindly chaired the seminars, and we were delighted to have Dr. Paul Giangrande, Consultant Haematologist from Oxford in the UK attend. Dr. Giangrande gave excellent talks on “Women and Bleeding Disorders” and on “von Willebrands Disease”. Eadaoin O’Shea, Haemophilia Nurse Specialist from National Centre for Hereditary Coagulation Disorders (NCHCD) in St. James’s also gave a talk entitled “A Journey Toward a Bleeding Disorder, Diagnosis and Beyond”, which was very interesting and informative, after which our very own Brian O’Mahony spoke about the services that we offer at the Society.
Registration and attendance was free. Attendance could have been better and we were a bit disappointed at the turn out, as we had spent a lot of time discussing our strategy to try and reach out to women with bleeding disorders, and to encourage awareness. We had contacted obstetricians, sent our publication on Women and Bleeding Disorders along with our flyer to all maternity hospitals in the country. We also sent a mailshot to all members and advertised the seminars in the March magazine. We also issued a press release which resulted in 2 newspaper articles being published.
The seminars were excellent and ideal for any woman with a known or suspected bleeding disorder. There are 1,165 women registered at the (NCHCD) in St. James’s Hospital, but very few are on our database or mailing list. These women suffer from von Willebrands Disease, mild haemophilia, or rare bleeding disorders. In the past women with undiagnosed bleeding disorders often faced long delays before adequate treatment, frequently heavy menstruation, and all too often unnecessary hysterectomy. Concerns now can include menstrual problems, pregnancy, carrier status and menopause. So these seminars were ideal for any woman who have concerns or who was interested in learning more about there condition.
We would like to encourage any woman with a known or suspected bleeding disorder to contact the Society or a health care professional for support. Knowing about your bleeding disorder and its severity, symptoms and treatment is vital.