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Celebrating the power of knowledge on International Thalassaemia Day 2022

This year’s ITD is on Sunday 8 May, promoting awareness about the global impact of the condition

Thalassaemia logo

The Thalassaemia International Federation (TIF) announced this year’s theme for International Thalassaemia Day (ITD) 2022. The TIF shared its message of “Be aware. Share. Care: Working with the global community as one to improve thalassaemia knowledge.”

The TIF stated the theme acts as a collective “open call to action to all supporters to promote awareness about thalassaemia and its global impact and share essential information and knowledge to support the best possible health, social and other care of patients with this disease.”

Thalassaemia is an inherited blood disorder and is the name for a group of inherited conditions that impact the blood’s haemoglobin levels. In order to be born with the main form of thalassaemia – beta thalassaemia – a child has to inherit a copy of the faulty beta thalassaemia gene from both parents.

Typically, this happens when both parents are deemed ‘carriers’ of the faulty gene, referred to as having the ‘thalassaemia trait’. It is important to note that although thalassaemia carriers do not have thalassaemia themselves, there is still a chance they could conceive a child with the disorder if their partner is also a carrier – eg if both parents have the faulty gene that causes beta thalassaemia major, there is a one in four chance of each child they have being born with the condition.

For children born with beta thalassaemia major, symptoms will usually develop a few months after birth, while less severe types may not cause any noticeable issues until later into childhood or even adulthood. Almost everyone with thalassaemia major or other, more serious forms will develop anaemia, which can cause chronic fatigue, heart palpitations and a shortness of breath.

As a consequence of anaemia, sufferers can also experience health problems from having too much iron in the body, caused by regular blood transfusions to treat anaemia, potentially leading to problems with the liver, heart and hormone levels if left untreated.

People who are usually affected by thalassaemia are often from, or have family members who originate from areas in the Mediterranean, India, Pakistan, Bangladesh, the Middle East, China and southeast Asia. Testing for the condition is routinely carried out during pregnancy but adults can take a blood test at any time.

The TIF aims to inspire individuals on a personal level because, as it recognises, despite the increasing global incidence of thalassaemia cases, there is an unmet need with regards to coordinated programmes in many countries impacted by the condition. This means that raising awareness and basic knowledge about prevention and symptom management in thalassaemia patients is essential.

The federation also recognises the severe lack of disease-specific understanding and poor health literacy are more prominent in developing countries, where more than 80% of thalassaemia patients are born.

It aims to enable patients and the wider global community to promote equity through improved access to educational resources and to help to change attitudes towards carriers and patients living with the disease.

Article by
Fleur Jeffries

25th February 2022

From: Healthcare

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