Being diagnosed with haemophilia or as a carrier can affect people in very different ways. There is no right or wrong way to feel. How you react will depend on your individual situation, why you are seeking testing now and what this news means to you and others in your life.
Support
Whatever your experience, you may need time to digest the information while you consider what this means to you or your daughter.
If you would like to talk to someone about your questions or feelings, don’t hesitate to reach out for support.
Your Haemophilia Treatment Centre is there to provide information and support at any time along the way – and in the future, if issues come up. They are also available for your partner and family and can talk to them separately, if preferred.
The Haemophilia Treatment Centre can refer you to a genetic counsellor or other counsellors.
You can also talk to your GP and they can refer you to counselling and other services to support you.
Talking to other women – you are not alone
You may find it helpful to talk to other women or girls affected by haemophilia, who have faced similar challenges and understand how you are feeling. The Haemophilia Treatment Centre, your local Haemophilia Foundation or Haemophilia Foundation Australia may be able to put you in contact with other women or girls in your situation.
Finding out you carry the gene – what does this mean to you? is a free HFA booklet which explores feelings after diagnosis, support and information, with tips and personal stories from Australian women.
Available from HFA
Or ask HFA to post you a copy – hfaust@haemophilia.org.au