Frequently Asked Questions

The simplest way is to ask your GP for a blood test “for haemoglobin disorders” (MBS Item 65078)

Your GP should request a full (or complete) blood count. Ensure to ask your doctor to check the Mean Corpuscular Volume (MCV) as well as a Ferritin study to review your iron status.

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.

Personal History: If you know you carry the trait, or think you might, then get tested and plan to have a discussion with any partners.

Family History: Is important especially if a history of Thalassaemia or Sickle Cell Anaemia is known.

Ancestral History: Is important as people from the following regions:

  • Mediterranean,
  • Middle-East,
  • South Asia,
  • South-East Asia including Southern China,
  • South America, and Africa

have a higher than average risk of carrying the genetic trait.

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.

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.

Yes, as long as iron levels are considered okay.

Consult with your doctor before going to donate to ensure you are in a position to do so.

It is important for all Thalassaemia patients to take iron supplementation ONLY when they are iron deficient.

If you are feeling lethargic and potentially anaemic, it is important to consult with your doctor prior to taking any iron supplementation, as this may not be required and may be more harmful than helpful.

It is not uncommon for pregnant women with Thalassaemia to experience iron deficiency throughout their pregnancy. It is vital however that you confirm your iron status with your doctor prior to commencing any iron supplementation.

 

Lethargy is common in pregnancy (particularly first trimester) so it is important to confirm the cause with your doctor.

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

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

Yes!

We are a registered charity with the Australian Charities and Non-Profit Commision (ACNC) and hold a current DGR eligibility status.

For more information you can also visit:

  • knowmytrait.org – a Thalassaemia awareness campaign for young adults,
  • Thalassaemia and Sickle-Cell Society of Australia (Victoria) –  FAQs page, and
  • TIF – The Thalassaemia International Federation.
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