Chief executive of the Irish Haemophilia Society, Brian O’Mahony, said it was crucial that women with a bleeding disorder knew the severity of the disease and received the appropriate treatment.
“Women with a bleeding disorder that is not diagnosed are in danger of serious bleeding during menstruation and the serious clinical impact of the birth of a child or during pregnancy,” he warned.
There are 1,165 women with bleeding disorders who are registered at the National Centre for Hereditary Coagulation Disorders in St James’s Hospital in Dublin.
The women suffer from von Willebrands disease, mild haemophilia or rarer bleeding disorders.
Women rarely suffer from severe haemophilia but it is quite common for women carriers of haemophilia to have relatively low blood clotting levels.
There are 114 women diagnosed with haemophilia in Ireland and 578 with von Willebrands. A further 417 have rarer bleeding disorders, of which 259 are uncharacterised.
“I think a lot of women are not being diagnosed with a bleeding disorder because it is not that easy to identify — it is a combination of laboratory tests and symptoms,” said Mr O’Mahony.
“There are also women who do not think they have a bleeding disorder because their bleeding pattern may be exactly the same as their sisters or mothers who are also suffering from the same condition,” he said.
“I think there needs to be more awareness among women about bleeding disorders. If they have unusually heavy periods or bruising that is not explained easily, then they really should get themselves tested,” he said.
Mr O’Mahony said women needed to persist with testing because sometimes they needed to be tested on a number of occasions before they got a proper diagnosis.
The Irish Haemophilia Society provides services and support for women with bleeding disorders and is holding free information days this weekend in Dublin and Cork this weekend.
Speakers at the information days taking place on Saturday in the Rochestown Park Hotel in Cork and on Sunday at the Hilton Hotel in Kilmainham, Dublin, include a consultant haematologist from the Oxford Haemophilia and Thrombosis Unit in Britain and a clinical nurse specialist from the National Centre for Hereditary Coagulation Disorders.