FAQs on relationships and lifestyle for people with haemophilia

FAQs on relationships and lifestyle
Whether you or someone in your life has just been diagnosed with haemophilia, or was diagnosed a while ago, you probably have some questions about the impact a bleeding disorder might have on your lifestyle and relationships. Here we provide answers to some frequently asked questions that you may find helpful.

Will haemophilia affect my lifespan?
The good news is that these days, people with haemophilia can expect to live long and active lives as a result of advances in treatment over the last 40 years. In the past, some people would have died as a result of their bleeding disorder, due to a misdiagnosis or lack of clotting factors. Today we have good access to health care and diagnosis is as simple as a blood test. Missing clotting factors associated with haemophilia can now be replaced using products isolated from the blood of healthy donors or generated using genetic engineering techniques.

How will I cope emotionally with having haemophilia?
No matter what stage of life you are at, addressing the emotional effects of haemophilia is an important part of managing the condition. While everyone is different, it’s ok to feel overwhelmed every now and then. The more time and energy you invest in your emotional health, the better equipped you will be to cope with whatever life throws at you. Remember, with the right information, a positive attitude and the support of others, you can live life to the full with haemophilia. You can also seek advice from the Social Worker or Counselor at your Haemophilia Treatment Centre.

Can I participate in sports and exercise?
Participating in sports and exercise can have many benefits – from improving your physical fitness to having a positive effect on your overall wellbeing. And the good news is that advances in haemophilia therapy over the years have meant that people with haemophilia now have lots of opportunities to become actively involved.

Everyone is unique, and there is no one sport or activity that is right for all people with haemophilia. Your ability to participate in certain activities will depend on a number of individual factors, such as the severity of your bleeding disorder, your bleeding history, the condition of your joints and muscles, and your physical capabilities. Because your situation is unique, it’s important to seek advice from your Haemophilia Treatment Centre before engaging in any sport or exercise regimen. You should seek advice from the Physiotherapist at your Haemophilia Treatment Centre.

Can I go travelling?
Just because you have haemophilia doesn’t mean that travelling isn’t for you! With the right preparation, you can experience the amazing adventures that travel can bring. It just requires a bit of forward planning. If you do decide to go off and see the world, or just take a trip up the coast, make sure you let your Haemophilia Treatment Centre know well in advance. This way they can assist you in making all the necessary preparations to help ensure that you have as safe a trip as possible.

Can I get a tattoo or piercing?
Obviously the greatest specific risk associated with tattoos and piercings for people with haemophilia is excessive bleeding, but you will also need to consider the risk of infection and allergic reactions to the metal or dyes used when planning any form of body art. Although healthcare professionals do not advise it, if you do decide to go ahead and get a tattoo or a piercing, there are a number of precautions you will need to take to minimise the risks. So if you are thinking about getting body art, make sure you ask your Haemophilia Treatment Centre for advice.

What about drugs and alcohol?
Drug and alcohol use is associated with a range of health risks for everyone, but this is especially the case for people with haemophilia as these substances can affect the blood clotting process. Please see your Haemophilia Treatment Centre for more information – they won’t judge you and they have likely discussed these issues with many of their other patients in the past. The important thing is that you have all the information at hand so that you can make informed decisions about how you want to live your life.

Should I tell my new partner that I have haemophilia?
If you are beginning a new relationship, the decision if, when and how to tell your new partner that you have haemophilia might require some thought – or not much at all! Everyone is different, and for some people telling others that they have haemophilia is challenging, while for others it’s pretty easy.

Many people find that sharing their situation with others is helpful as it means that others can understand how the condition affects their life, and help provide any support that might be needed. If you have any questions about if, when and how to tell your partner about your condition, talk to your Haemophilia Treatment Centre for advice and support.

Will I be able to have children?
Many people with haemophilia have children. However, when you and your partner start thinking about having children, you’ll probably need to consider not only whether you are ready for the responsibilities of parenthood, but also the possibility of passing your bleeding disorder on to your child. This is because haemophilia is an inherited condition that can pass down from one generation of a family to the next in their genes.

Fortunately, there are many ways to create a family and there are a number of options available that can decrease the risk of having an affected child. To help guide you through which options might be right for you, many Haemophilia Treatment Centres offer genetic counseling services for couples who are considering becoming parents.

My child has haemophilia. How will I cope?
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. Feel reassured that having a bleeding disorder is very manageable. You can find some tips on for coping with haemophilia that other parents have found helpful here.

My sibling has haemophilia. How will this impact me?
Brothers and sisters play a big role in each others lives, so if your sibling has haemophilia, then it is likely to also affect you in many ways. You might have to tag along to lots of doctor’s appointments and sometimes feel like your sibling is getting all of the attention. So it probably won’t surprise you that you may have both good and bad feelings about your sibling and their condition – and that’s okay! You can find some tips for dealing with having a sibling with haemophilia here.

Where can I access more support?
Although you or your loved one has a rare bleeding disorder, it’s important to remember that you are not alone. There are many families in Australia, just like yours, who are living with 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. Your local or national Haemophilia Foundation groups are also there to support you.

The good news is that these days, people with haemophilia can expect to live long and active lives as a result of advances in treatment over the last 40 years.

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