What is thalassemia?

What is thalassemia? We hear this question a lot. Very little seems to be known about this terrible condition which affects so many families. On this page we will try to explain more about the disease, Thalassemia symptoms and how important recognition of Thalassemia is in both in Cyprus and in other countries.

This is an issue very close to our hearts as a family member (our first cousin) suffers with this disease. She has suffered enormously since we were children but never complains and enjoys life with a smile on her face. This page is dedicated to her.

So what is Thalassemia then? Thalassemia is a genetically inherited blood disorder which excessively destroys red blood cells causing extreme anaemia, which leads to increased fatigue. Other symptoms of Thalassemia include weak immune systems, enlarged organs, abnormal features and the disease often leads to heart problems. Sufferers have a very low life expectancy. It is passed through generations via a gene known as a trait.

Beta Thalassemia and Alpha Thalassemia

There are three different types of Beta Thalassemia – minor, intermedia and major. The children affected the worst need repeated blood transfusions and sometimes even bone marrow transplants. Fatigue can be so bad that they do not have the energy to walk around on some days.

It is most common in countries around the Mediterranean Sea such as Cyprus, Turkey, Egypt, Malta, Greece and parts of Italy. There is also a high percentage of carriers in parts of Asia and Africa. The number of carriers of the Beta Thalassemia trait is highest in the Maldives.

The Alpha Thalassemia trait is most commonly found in areas of South East Asia, such as Thailand, as well as parts of Asia, Africa and the Middle East. Many babies born with severe Alpha Thalassemia are stillborn.

Thalassemia in Cyprus

Past studies have indicated that around one in every seven people of the Cypriot population (15%) carry the Beta-Thalassemia trait. The figures are conducted across the island and include both Greek and Turkish Cypriots, who suffer equally from the disease.

Cyprus is one of the only countries to have introduced a screening programme for pregnant women and their partners and is used on both sides of the island. The scheme, which was established in the 1970’s, has been extremely successful in reducing the Thalassemia newborn rate in Cyprus from one in 158 to nearly zero.

Despite the fact that the screening is viewed as unethical by some, it has been actively encouraged by the Greek Orthodox Church in south Cyprus. Many Greek and Turkish Cypriots born abroad continue to get themselves screened also.

Due to better healthcare and research, the Cypriot population living with Thalassemia has a much higher life expectancy than they did 30 years ago. An overwhelming majority of Cypriot Thalassemia patients are over the age of 25.

Unsurprisingly, this has put a strain on the Cypriot healthcare system financially and in terms of a shortage of blood which is needed for transfusions. This situation would have been much worse without the screening, but blood donations and finance are still needed.

Thalassemia Charities

Thalassemia International Federation

UK Thalassemia Society

There are many other Thalassemia charities located all around the world in every continent. To find the closest one to you please check on the full list here:

http://www.thalassemia.com/support_inter.html

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