Balancing life and managing beta thalassaemia
Kostas, living with beta thalassaemia major in Germany
Everyone’s experience of living with beta thalassaemia and how they cope is different, but you try to keep going even if you face challenges.
You might be happy with how you’re doing, or maybe you’re looking to change how you manage your life with beta thalassaemia. The past cannot be changed, but you can choose where you go from here. This website is a support tool to help you find a balance between managing your condition and living your life with beta thalassaemia.
About ‘Find your path’
This website has been developed by Vertex Pharmaceuticals UK and is designed to support you to work with your healthcare team and find your own way to balance life with managing beta thalassaemia.
In these pages, you can hear about and learn from the experiences of other people living with beta thalassaemia and their carers. Living with beta thalassaemia will look different for everyone. But seeing and hearing how others live could help you think about what’s important to you and find your own way of living with the condition.
It might even help you discover your own path so you can keep moving forward with confidence.
Aisha, living with beta thalassaemia major in the UK
Beta thalassaemia basics
Who does it affect?
Approximately 290,000 people worldwide have beta thalassaemia.3 Historically, the condition has been most common in the Mediterranean, Southeast Asia, and the Middle East.3,4 Nowadays, largely due to population migration and intermarriage between different ethnic groups, beta thalassaemia also occurs more frequently in other parts of the world, including Western Europe and North America.4 In the UK, around 1,300 patients with beta thalassaemia were registered with the NHS in 2021.5
What are the main symptoms?
Beta thalassaemia will affect everyone differently and your symptoms depend on the severity of your condition. Without treatment, people with beta thalassaemia may have a low number of red blood cells, which is known as “anaemia”.1 Over time, complications can also develop if beta thalassaemia is not treated.1 But there are treatments available to help manage your condition.
Check out the links below to see where you can find out more about beta thalassaemia.
Your healthcare team is there to support you in managing your condition. This team includes all the healthcare professionals you need to provide you with different kinds of care. You’ll see some often and others you will only see if you have a specific need.
Your healthcare team in hospital may include:
- Hospital consultant (haematologist, paediatrician or paediatric haematologist)
- Other hospital doctors (junior medical team and other specialists)
- Specialist nurse
- Psychologist
- Day unit or ward nurses
- Pharmacist
You may also see healthcare professionals outside the hospital, which may include:
- General practitioner (GP)
- Community specialist nurse
- District nurse
- Psychologist
- Social worker
- Benefits adviser
Remember, you can talk to anyone in your healthcare team about your health but you may find it easier to speak to particular team members. Whoever you feel comfortable talking to, let them know how your condition is affecting you and your life to make sure you get the care and support you need.
Explore the paths open to you
Whether you want to learn more about beta thalassaemia or are looking for ideas for how to better look after your mind and your body, you’ll find information and stories from other people with beta thalassaemia in the following pages.
Go ahead and look around…
Resource Hub
Our downloadable tools and guides will help you manage your life with beta thalassaemia
