Person beim Überqueren eines Zebrastreifens

Dein Leben mit der Erkrankung ins Gleichgewicht bringen

A balanced life with beta thalassaemia

Living with beta thalassaemia is different for everybody, but it always brings a series of challenges. No two people with beta thalassaemia are alike.

No doubt you are already managing to keep on top of everyday life with your condition – but perhaps there are also some things you would like to change. Take the time to think about how you would like your everyday life with beta thalassaemia to look.

There are several ways to live better with beta thalassaemia. Your life with beta thalassaemia will look different from that of other patients. This is because you are unique and special.

Kostas, Betroffener mit Beta-Thalassämie major, im Gespräch mit Gaia

Kostas, a patient with beta thalassaemia major, from Germany

Finding support and guidance

Beta thalassaemia is a complicated condition You should know what medical care is available for you. You should also feel comfortable with your doctor and treatment team so you feel able to ask all your questions in a safe and confidential atmosphere.
You are probably already looked after by a doctor who specialises in blood disorders, called a haematologist.

Haematology is made up of two Greek words, haima (= blood) and logos (= study), which together mean "the study of blood".

You can use your appointments with your doctor to ask questions about your condition and its treatment and to tell him/her about any changes in your health since the last appointment. Have a look in our resource hub for the guide "Your beta thalassaemia treatment journal". There, you will find a few questions and space to take notes to help you get the most benefit from your doctor's appointments. This way, you will never forget any questions that might come to mind from time to time. As well as your medical care, it can be helpful if you have a social circle that supports you as you manage your condition. This could include family and friends or certain types of therapist. Be patient with your parents or other healthy people around you, though. Sometimes, they simply won't understand how you are doing, because they've never experienced it. They just want to help you, even though they won't always be able to.

 

There are also patient organisations, whose members will listen to and help you. Drop by one or more of them! You should never have to face your condition alone. It really can also be "balm for the soul" to be able to talk to people who share your thoughts, fears and feelings as they live with this condition themselves. They know all about it – and together are overcoming the challenges of living with beta thalassaemia.
Every one of us has different needs in terms of practical or emotional support. If you don't have a lot of people around you, you can also find a self-help group where you can exchange experiences. A patient organisation will be able to tell you how to find a group like that near where you live.

Aisha, Betroffene mit Beta-Thalassämie major, im Gespräch mit Naziha

Aisha, a patient with beta thalassaemia major, from the United Kingdom

Your doctors and treatment team will help you live the life you want with your beta thalassaemia. Tell them what support is most important to you.

Tips for living with beta thalassaemia

Get the most out of your medical treatment: Beta thalassaemia is a complex condition, but support is there for you. Discuss with your doctor how often you need check-ups, and make sure to attend them. Take all your treatments as prescribed and contact your doctor as soon as possible if you get any side effects.

Don't be too shy to ask for help: You don't have to try to cope with your condition all by yourself. If you are living with beta thalassaemia, the people around you can be essential. Ask friends and family, other patients, and your medical and care team for support and guidance.

Avoid infections!

Infections are a risk for your health – more so than for people without beta thalassaemia. Your condition makes your immune system weaker than that of healthy individuals. This is caused by both your blood condition and the iron overload caused by the transfusions.1 You might have to take antibiotics, especially if you have had your spleen removed.1,2

Wash your hands regularly with soap and water, or use a hand disinfectant. Avoid close contact with people who have contagious diseases.

Talk about vaccines!

Vaccines are a way to prevent disease and are recommended for people with beta thalassaemia.2 Your doctor can tell you which vaccines are advisable for you.

A healthy lifestyle

If you have beta thalassaemia, there is a range of nutrients that are important for you and the specific requirements of your condition. You must also pay attention to certain things. For example, if you have beta thalassaemia intermedia, you should not eat too much iron in your diet.2 You can find tips for a healthy diet here. Refraining from smoking and excess alcohol consumption is also good for your health.2

Stay active despite beta thalassaemia!

Keeping moving on a regular basis has a lot of advantages. Movement and exercise are good for your health and make you fit and ready for everyday life.2 However, you might find you prefer to avoid movement and exercise because of some of your symptoms, such as pain or joint problems. Find a way to keep mobile that works for you. Make sure, too, to ask your doctor or your treatment team about which types of exercise would be beneficial for you. You can find more tips here.

If you don't have many contacts around you, you can join a self-help group. There, you will meet other people with beta thalassaemia and can exchange experiences. A good place to start is a patient organisation.

Find out what is important to you

You didn't ask to have beta thalassaemia, but you can find a way to bring your life with a chronic disease into harmony with other things that are important to you in life.

To make sure you do well over the long term, regular check-ups in consultation with your doctor and therapists are especially important. Living successfully with beta thalassaemia means much more than that, though.

Waage

Be proactive about talking to your treatment team and other patients, and take charge of your life with beta thalassaemia yourself. Grab the bull by the horns and accomplish it together!

What can you do when everything becomes too much? This is how Kostas approaches it.

Zwei Computer-Tabs

Ressourcen-Hub

Unsere Unterlagen zum Herunterladen helfen Dir dabei, Dein Leben mit Beta-Thalassämie zu meistern.

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    1. Farmakis D, et al. Pathogenetic aspects of immune deficiency associated with β thalassemia. Med Sci Monit. 2003; 9(1): RA19–22.
    2. Farmakis D, et al. 2021 Thalassaemia International Federation Guidelines for the Management of Transfusion-dependent Thalassemia. Hemasphere. 2022; 29; 6(8): e732.
    3. https://www.medi-fit-gmbh.de/fitnesstipps/sport-macht-gluecklich.html Last accessed: 28.02.2023