1 - How can I find out if I am a carrier of the genetic trait?

The simplest way is to ask your GP for a blood test “for haemoglobin disorders”.

Your GP should request a full (or complete) blood count. Ensure to ask your doctor to check the MCV - mean corpuscular volume. In addition ask for a ferritin study to review iron difficiency.

Also discuss the need for a (Hb EPG) hemoglobin electrophoresis screen as part of the blood test. These tests can all be done as part of a simple or regular blood test and are covered by Medicare. However, you should request that your GP includes the extra checks as part of your blood test.

2 - Why shoul I get a test?

Personal Hisorty: if you know you carry the trait, then you should discuss with your partner. Family history: is important especially if a history of thalassaemia or anaemia is known. Ancestral Hisotry: is important as people from the following regions - Mediterranean, Middle -East, South Asia, South-East Asia including Southern China, South America or Africa have a higer than average risk of carrying the genetic trait.

3 - I have been diagnosed with thalassaemia minor (carrier). What should I worry about?

People with beta thalassaemia trait (carrier or minor) will usually experience no health problems other than perhaps mild anaemia. You may have beta/alpha thalassaemia trait and not know it. However, carriers of thalassaemia or sickle-cell trait should always tell their doctor, especially during pregnancy. In addition, they should ensure their partners are aware and ideally have their partner test for the genetic trait before starting a family.

Our concern is that they be aware that they may pass down their thalassaemia gene to their children. If their partner also has thalassaemia minor, they then have a 25% (1 in 4) chance with each pregnancy of having a child with the thalassaemia major condition.

If people know that they have this 25% chance BEFORE they start a family, they can discuss their family planning options with health professionals, such as Genetic Counsellors. The family planning options available to them may alter their chances of having a child affected by thalassaemia.

4 - When is the best time to have a test?

You can have a test at any time, but it is important to have it before having a family. Ask your GP to give you a test if you are planning a family, or are at the start of a pregnancy.

5 - Am I able to donate blood if I have alpha or beta thalassaemia minor?

Yes, as long as iron levels  are considered okay. For a female thsi would be around 120.

6 - I have thalassaemia minor and feel very tired /exhausted. Should I be taking iron supplements?

For patients with alpha or beta or thalassaemia minor, the essential thing is that IF they are iron deficient they should have iron supplementation. What should not happen is that they be given iron simply because they are a bit anaemic (of which there are many causes) and NOT iron deficient.

7 - I have thalassaemia minor, am pregnant and feel very lethargic. Should I be taking iron supplements?

It is essential that you find out from your doctor whether you are iron deficient from the iron studies, (and it is not uncommon for thalassaemia carriers (who have the minor trait) who are pregnant to be iron deficient. If that is the case and you are “on the threshold” of Fe deficiency it is reasonable to take iron supplements (with your Doctor's approval).

8 - Do you have information sheets I can download?

Yes, we have information sheets in many languages including English, Arabic, Greek, Chinese, Italian, Vietnamese and many others.

Please click:  Information   العربية   信息    Πληροφορίες   Thông tin   Informazione   විස්තර    inpormasi   தகவல்

9 - Where are the treatment or support centres in NSW?

For a list of Treatment Centres with specialist knowledge in haemoglobin disorders, please click here


Also visit Thalassaemia and Sickle-Cell Society of Australia (Victoria) -  FAQs page

Also visit knowmytrait.org - our new awareness campaign for young adults.


Related pages: Patient Support page and Resources page

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