Living with Alpha Thalassemia

This is the ninth and last part of our series about the condition based on our patient booklet “Fast Facts for Patients: Alpha Thalassemia”. This article provides information on living with alpha thalassemia (AT).

Some people with AT already know that it runs in their family. For others, it’s a complete shock when they are diagnosed with AT because of anemia symptoms or when a baby is diagnosed shortly after birth. Genetic counseling can help you to understand your condition and its implications, including the risk to any future children you may have.

You are likely to have a lot of questions. It’s important to find out as much as you can about AT and about your own situation.

AT is complicated and 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.

Should I Tell Other People?

When should you tell people that you are a thalassemia carrier or have AT trait? The simple answer is: whenever you are ready. Mostly, you don’t have to tell people if you don’t want to. But you particularly need to be open with your partner if you are thinking of starting a family in the future. They will need to be tested too.

Talking about a genetic problem can be difficult. People sometimes feel it’s their fault. But you have no control over the genes you inherit. You can use this booklet to help others understand more about AT.

Important: Living a healthy life is important for everyone. When you have thalassemia, healthy choices are particularly important.

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

It’s important to look after your general health. Make sure you eat well.

People with thalassemia often have low levels of some vitamins and minerals, such as zinc. This is partly because of the anemia, and partly because of high iron levels and the treatment used to remove iron. Your doctor may give you supplements.

Some doctors suggest avoiding foods that contain iron, but others think that this has little effect in preventing iron overload. It’s best to discuss your diet with your own AT 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.

Ask for Help If You Need to

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

Questions for Your Doctor

What type of AT do I/does my child have?
How many gene changes are there?
Are they deletional or non-deletional gene changes?
What are the implications of the gene changes I have?
What impact will AT have on me/my child?
Will I/they need regular treatment?
What are the likely side effects of treatment?
What complications could there be and how likely are they?
What is the likelihood of me having another child with AT?
Is there anything that can be done to reduce the risk of having another child with AT?
Will my child with AT be able to have children and what do they need to know beforehand?