Dealing with Haemophilia

It’s no secret that a life-long condition like haemophilia can affect you beyond the physical symptoms. And as you navigate through the different stages of life – from starting at a new school to moving out of home to beginning new relationships – you are likely to face some challenges along the way. There may even be times when you feel emotionally overwhelmed by your condition and wonder why this is happening to you. But remember, with the right information, a positive attitude and the support of others, there is no reason why you can’t live life to the full with haemophilia.

For teenagers

No one wants to feel like an outsider and this is particularly the case for teenagers. There is often a lot of pressure to fit in at this stage of life so teenagers with haemophilia may sometimes feel frustrated by their condition, and resent the fact that they are different to their peers. On top of this, this is the time when you must learn the skills necessary to manage your condition independently as you transition into adulthood.

Teenagers are also known to explore new things, and in some cases this may involve making decisions about drugs and alcohol or getting tattoos and piercings. For teenagers with haemophilia, it is important to fully understand the risks associated with these kinds of activities.

For adults

For adults with haemophilia, there may be concerns about what impact the condition might have on your relationships and the implications for starting a family. You may also feel uncertainty around how haemophilia might affect your employment choices and whether it is a good idea to tell your employer and/or workmates that you have haemophilia.

For parents

Finding out that your child has haemophilia can come as quite a shock, and at first you may wonder how you will be able to cope. However, it’s important to remember that how you react to your child’s haemophilia will help impact how they see themselves and their condition. While it’s natural to want to protect your child as much as possible, especially when they are very young, letting them find their own boundaries (within reasonable limits of course!) is essential for building your child’s self esteem. The good news is that most parents find they become more relaxed over time as they learn more about haemophilia and how to manage it effectively.

No matter what stage of life you or your loved one is at, addressing the emotional effects of haemophilia is an important part of dealing with the condition. The good news is that there are many things you can do to make the most out of life with haemophilia

 

Accessing support

Although you or your loved one has a rare condition, it’s important to remember that you are not alone. There are many families in Australia, just like yours, who are dealing with the effects of haemophilia. You might like to ask your Haemophilia Treatment Centre whether they can put you in contact with other people in your local area who are going through similar experiences.

By investing time and energy in your emotional health, you should become better equipped to cope with whatever life throws at you. You might like to talk to your family and friends about how you are feeling. Just getting things out in the open, can sometimes make you feel more positive about the situation.

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