Most people with a bleeding disorder who can access good treatment are able to lead normal lives and expect a near-normal life expectancy, particularly if their condition is mild or moderate. Emotionally, times are hardest when the bleeding disorder is first diagnosed, or someone has a bad bleed or develops an inhibitor, and at changes in
life, such as moving away from the parental home. You’ll often wish you weren’t affected, and wonder why it happened to you and not another close family member. At times you may feel like ignoring the fact that you have a bleeding disorder at all. But by burying your head in the sand you neglect the major part you can play in managing your bleeding disorder and may suffer harm
You will make mistakes, such as travelling without treatment, wishing you had treated a bleed that you thought didn’t need treating, or forgetting your prophylaxis and as a result having a bleed. This is inevitable and it’s important not to let it get you down but to learn from the experience.
Many people appreciate the opportunity to meet others in a similar position to share
experiences and feelings, and learn from each other. Some go on a self-management course to learn skills to better cope with living with a bleeding disorder and get the most out of their haemophilia centre’s services. Ask your centre or Haemophilia Scotland what groups and activities are available to you.
If you want to have a family you will have to consider the possibility of passing on the gene that gives rise to the bleeding disorder. It is possible to minimise the risk with techniques that use IVF to determine the sex of your baby, for example to ensure you don’t have a boy with haemophilia. You also face the choice of investigating if your unborn baby is carrying a gene that would give rise to a bleeding disorder, and then deciding what to do with that information. Alternatively you may consider adoption or sperm donation to be the best way of having an unaffected child. These are not easy things to think through, and we recommend you seek expert help in coming to the best decision for you.
There is a psychological support service available in Scotland for people affected by a bleeding disorder.
Looking after someone with a bleeding disorder
Looking after someone else may turn into a lifelong commitment. As a carer you will become quite an expert in managing your partner’s or family member’s condition. Sometimes you’ll wish they would do more for themselves, as you need time to focus on your own health and wellbeing. Alternatively, you might prefer to be more involved but feel you are not told everything. We encourage carers to attend clinical review appointments and access all the forms of support that are available.