News and Updates

May 15, 2017

Haemoglobinopathies and the Rheumatologist

Abstract The haemoglobinopathies are a relatively common, heterogeneous group of inherited conditions that are the result of either a quantitative abnormality (e.g. thalassaemia) or structural [e.g. […]
May 15, 2017

Greetings from the Coordinator of Thalassaemia Society of NSW

“Dia Dhuit” from Cyril, Dia Dhuit is Gaelic for “hello”. Gaelic is one of the national languages of Ireland, and is my place of origin, but […]
May 10, 2017

Living with Thalassemia: Robert’s Story

Did you know that beta thalassemia major, the most severe form of thalassemia, affects at least 1,000 people in the United States? By staying committed to […]
 

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About our foundation

Our Mission

The Thalassaemia and Sickle Cell Society of Australia (TASCS Australia) is a not-for-profit community organisation dedicated to:

(A) Serving as a support network for Australians affected by genetic blood disorders (also known as "genetic haemoglobinopathies") like thalassaemia and sickle cell anaemia.
(B) Seeking to raise public awareness of genetic blood disorders within Australia, and the need to encourage the public to be tested for these conditions.
(C) Encouraging healthy members of the public to donate blood to the Australian Red Cross Blood Service, as fellow Australians who are affected by genetic haemoglobinopathies, require regular blood transfusions in order to live and manage their condition.

Important note to patients

*Avoid vitamin supplements unless prescribed by a doctor
*Do not take iron supplements - EVER
*Eat only fresh food
*Do not eat processed or fast foods
*Do not drink soft drinks
*Eat plenty of fruit and vegetables, yoghurt and fresh nuts.
*Avoid sweets and ice-creams

 

 

Useful information

How Can I Find Out If I Am A Carrier Of Thalassaemia Or Another Haemoglobin Condition?

Ask your GP for a blood test "for haemoglobin disorders". Family history is also very important so keep in mind immediate or extended family and if thalassaemia is known in your family history.

When Is The Best Time To Have A Test If I Am A Carrier?

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

I Have Been Diagnosed With Thalassaemia Minor (Carrier). What Should I Worry About?

People with beta thalassaemia trait will usually experience no health problems other than a mild anemia. You may have beta/alpha thalassaemia trait and not know it.

Thalassaemia minor (carrier) is generally asymptomatic and usually does not present any significant symptoms. Please note that a disease is termed asymptomatic if a patient carries a disease or infection but experiences no symptoms.

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 thalassaemia major.

If people know that they have this 25% chance BEFORE they start a family, they can then 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.