The importance of balance
Living with beta thalassaemia can be difficult and everyone’s experience with it may be different. But choosing to think about how you want to live with your beta thalassaemia is an opportunity for you to take control of your life. It can help you feel in charge of your condition, rather than letting beta thalassaemia put you off balance.
You might be happy with how you’re managing, or you might want to do some things differently. Either way, it might be worth taking some time to stop and think about how you want to live with beta thalassaemia – and what you can do to get started.
There are different ways people can manage life with beta thalassaemia to stay well. How to live well with beta thalassaemia will look different for you to how it looks for other people.
Kostas, living with beta thalassaemia major in Germany
Getting support
Beta thalassaemia is a complicated condition, so it’s important to know what medical care is available to you. It’s also important that you have a good relationship with the people who help you manage your symptoms, so take the time to find people in your healthcare team who explain clearly what you need to do and help you find your path to a balanced life.
It’s likely you will be under the care of a paediatrician – a doctor who treats children – or a haematologist – a doctor who specialises in blood conditions – as part of the healthcare team looking after you. If you have any specialist questions about your beta thalassaemia, make a note to ask your doctor about them. Make sure you attend regular check-ups with your day-to-day healthcare team, so you keep on top of any issues and optimise your health.
An important part of living with beta thalassaemia is to set up a good support system to help you. This can be family, friends or your local community and/or your healthcare team. There’s no need for you to try to manage your condition alone.
Different people have different strengths, offering both practical and emotional support. You might consider joining a support group, where you can share experiences with others, if you don’t have lots of people around you.
Remember, your healthcare team are there to help you live the life you want with beta thalassaemia. You can talk to them and others around you to let them know what support you need.
Tips for living with beta thalassaemia
Aisha, living with beta thalassaemia major in the UK
Make the most of your medical care1: You can make the most of your regular check-ups and let your healthcare team know how things are going. It’s also important to take any treatments as your healthcare team tells you, to help you stay well. If you have any side effects, let them know as soon as you can.
Don’t be afraid to lean on others1: Having a good support system can be really helpful. This can be family, friends, or your local community, as well as your healthcare team.
Try to prevent infections1:
You may get sick easily due to your condition. Washing your hands frequently using soap and water and avoiding close contact with people who are ill can help too.
Get your vaccines1:
Vaccines are a simple way to help avoid infections. Your healthcare team will discuss any vaccines you might need to help make sure you’re protected.
You might consider joining a support group, where you can share experiences, if you don’t have lots of people around you. Different people have different strengths and can offer you different kinds of support.
Weighing up what’s important
You didn’t choose to live with beta thalassaemia, but you can choose how you balance living with a lifelong condition and the other things that are important to you in life.
Of course, keeping up with your treatments and going to your regular check-ups is part of staying well with any long-term condition. But there’s more to living with beta thalassaemia. By weighing up what’s important to you and having conversations with your healthcare team and others you can find the right path for you to move forwards with confidence.
Like any chronic condition, the effects of beta thalassaemia on your life can go beyond just the physical symptoms. Continue to be an active leader in managing your life with beta thalassaemia through an ongoing and open conversation with your healthcare team. Together you can find the path that’s right for you.
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