This is the seventh and last part of our series about the condition based on our patient booklet “Fast Facts for Patients: Beta Thalassemia”. This article offers information on how to live with beta thalassemia (BT) and about asking for help.

Living with Beta Thalassemia

Getting a diagnosis of BT – whether for yourself or your child – can be a shock, even if you know BT is in your family background. You are likely to have a lot of questions. It’s important to find out as much as you can about BT and about your own situation.

To do that, it’s best to talk to a knowledgeable healthcare professional or use other trusted sources of information about BT. Genetic counseling can also help you to understand your condition and its implications.

It can be difficult to know which websites on BT are accurate and have up-to-date information.

BT is complicated so it’s easy to get confused. It may help to write down a list of the things you need to know or questions you want to ask and take it to your doctor’s appointment. It may also help to take someone with you, so you can compare notes afterwards.

Treatment is improving all the time for BT. Many children born with the condition are now expected to have a normal life span, and there are things you can do to help yourself stay as healthy as possible.

Have Treatment When You Need It

The best way to avoid complications is to stick to any treatment schedules and go to all your check-up appointments.

Important: Contact your doctor promptly if you have any signs of infection or other illness and make sure you keep your vaccinations up to date – especially if you’ve had your spleen removed.

Your Diet

When you have thalassemia you may have low levels of some vitamins and minerals, such as vitamin C, zinc, folic acid and vitamin D. This is partly because of the anemia and partly because of high iron levels and the treatment used to remove iron. Your doctor may check your levels and give you supplements of anything that you’re lacking.

Some doctors suggest avoiding foods that contain lots of iron and some think that this has little effect in preventing iron overload. It may be useful to check the iron content of packaged foods and medications and, in case of doubt, ask your healthcare team for advice.

It’s always best to discuss your diet with your BT healthcare team.

Keep Fit for Healthy Bones

Regular physical exercise has many benefits. It can improve your mood and help strengthen your bones. Alcohol and smoking are best avoided.

Regular physical exercise has many benefits

Asking for Help

Do ask questions and tell your healthcare team about anything that’s concerning you. They know how complex BT is and won’t mind, even if you ask the same questions more than once.

Questions for Your Doctor

  • I’ve been told I’m a carrier of a BT gene – what are the implications for me and for my children?
  • What is the likelihood of me having a/another child with BT?
  • Is there anything that can be done to reduce the risk of having a child with BT?
  • What type of BT do I/does my child have?
  • What impact will BT have on me/my child?
  • Are there any particular warning signs I need to be aware of at home?
  • Will I/they need regular treatment?
  • Will my/their need for treatment change as I/they get older?
  • What are the likely side effects of treatment?
  • What complications could there be and how likely are they?
  • Will my child with BT be able to have children and what do they need to know beforehand?

 

Information based on Fast Facts for Patients: Beta Thalassemia (Karger, 2023).

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