Quality of life
Being a carrier of hemophilia can have a significant impact on a woman’s health and her academic, professional, and social life.
Excessive or prolonged menstrual bleeding can be especially difficult for young girls, who may isolate themselves from family and friends, miss days from school, or avoid social events due to pain, discomfort, or the fear of staining clothing. A girl’s self-image and confidence can be negatively affected if she experiences shame or embarrassment because of heavy menstrual bleeding.
Many carriers are not aware that their symptoms are abnormal and do not seek medical advice. Even when they do, caregivers are not always well informed about bleeding disorders and the right diagnosis may be overlooked. Furthermore, medical care for women is lacking in many countries around the world. There may be cultural taboos and obstacles preventing women from seeking help, particularly for menstrual problems.
Heavy and prolonged menstrual bleeding and pain can affect a woman’s sexuality and may cause problems in her marriage. Women may also need to take time off work each month because of heavy bleeding, which can impact their career choices or professional success.
Many carriers of hemophilia, like others at risk of passing on a genetic disease, also experience guilt. They may feel as though they should not have children because of the possibility of passing on a bleeding disorder, or having a daughter who must face this possibility in turn.
The prospect of marriage may be affected because men, or their families, may not accept the risk of having an affected child. If they do have children with hemophilia, the needs of that child can put pressure on all family members, including siblings.
Many hemophilia treatment centres can provide carriers with skilled and sensitive counselling. The professionals there can provide information and support to work through these complex feelings and to empower women to take charge of their condition and advocate for proper treatment. Building a support network of other women who are facing the same issues, through the hemophilia treatment centre or local patient organization, can be a great source of comfort.
Updated November 2012