Bleeding Disorders in Irish Women

Bleeding disorders in Irish Women
There are XX females currently diagnosed in Ireland with haemophilia A and XX with haemophilia B. The vast majority of these are carriers with factor VIII or factor IX levels which put them in the category of mild haemophilia. Thankfully, they will not suffer from spontaneous bleeds into joints or muscles so characteristic of severe haemophilia, but they may require factor replacement therapy following trauma, surgery or childbirth and menstruation can pose problems beyond the normal range of the female experience.
von Willebrand’s disease is more democratic from a gender perspective, affecting both sexes. Indeed, of the XXXX persons in Ireland known to have von Willebrand’s disease, XX are female. Again, many will not require therapy on a regular basis but for females, menstruation is often characterised by menorrhagia, pregnancy by additional concern about bleeding and contraception more often a therapeutic requirement than a life choice. Rarer bleeding disorders also affect females.
Women living with bleeding disorders often have concerns around menstrual problems, pregnancy, carrier status and inheritance and treatment. Knowing about your particular bleeding disorder and its severity, symptoms and treatment is vital. Registering at the National Coagulation Centre and getting the expert medical advice and assistance needed is the path to helping you cope with a diagnosis of a bleeding disorder or carrier status.
Women’s Bleeding Disorders Clinic
In recent years, there has been a growing awareness of the needs of women with bleeding disorders. The National Coagulation Centre (NCC) team, led by Dr. Niamh O’Connell, Consultant Haematologist, initiated a clinic dedicated to women with bleeding disorders. This clinic provides a wide range of services to include medical, nursing and the support services of a social worker and clinical psychologist. In the future, we hope to incorporate the services of a gynaecologist at this clinic.

The commonest bleeding disorders, which may affect women, include von Willebrand’s Disease, haemophilia (carriers), low levels of other clotting factors and platelet function disorders. Inherited bleeding disorders can be especially problematic for affected girls and women due to the monthly occurrence of menstrual periods and the effects of reproductive health. The type of bleeding reported from women with bleeding disorders includes heavy periods, bleeding after childbirth, prolonged nose bleeding, and delayed bleeding following dental surgery or general surgery. Many women are not aware of the services available for managing bleeding symptoms or are not sure whether their symptoms warrant treatment.

Heavy periods are the most common problem for women with bleeding disorders. Adolescent girls and post-menopausal women, may suffer the most. Chronic heavy periods may lead to a diminished quality of life due to constant fatigue and possible iron deficiency. Women often avoid activities both at work, sport, travel and perhaps family events because of heavy periods. School attendance and participation in school activities can be compromised and some women may suffer from depression because of the impact the heavy periods have on their life. The medical management of heavy periods for women with bleeding disorders commences with the expertise of a haematologist. At our clinic, the Consultant Haematologist advises women on medical management of heavy menstrual bleeding and if necessary, will refer women to a gynaecologist. We assess the impact that heavy periods have had on each individual and referrals for support are arranged as necessary.

Planning a family and managing a pregnancy is a very important time when it is necessary to seek the advice of a haematologist. Following previous appointments at a carrier clinic, couples will understand their chances of passing on the bleeding disorder to their children and the available choices for pre-natal diagnosis. However, this information may have been received long before planning a family. To avail of up-to-date information, a couple would be advised to attend prior to each pregnancy. Couples may require repeated visits to a nurse, doctor, social worker, or clinical psychologist in order to seek advice and support for the decisions which they make regarding planning their family and the management of their pregnancies. In some cases, pre-natal diagnosis techniques are available to couples that wish to determine if their child may have their bleeding disorder.

Generally, a pregnant woman will attend the NCC clinics three times throughout her pregnancy to monitor the coagulation changes that occur for her while pregnant and plan for appropriate management throughout the pregnancy, at delivery and postpartum. Each visit is followed by correspondence with the Obstetrician, GP, local Haematologist and if the case warrants, a Consultant Paediatrician in preparation for a child who may be born with a bleeding diagnosis. Prior to the delivery of the baby, the woman is made aware of the special precautions necessary for her care and the safe delivery of her child.

If you would like to talk to somebody about making an appointment, please contact the National Centre on 01 416 2141.