TODAY.AZ / Society

Thalassemia: building fight confidence against disease

03 February 2016 [10:07] - TODAY.AZ

/By AzerNews/

By Laman Sadigova

Some children who have thalassemia can live happily without any symptoms, while others who do can feel in a severe way.

Those children may feel tired or irritable, be short of breath, dizzy or lightheaded or have pale skin, lips and nails compared to their normal color.

The feeling of despair covers parents’ soul when they see how their child cannot play with other children, afraid of every small scratch on their small fingers.

Azerbaijan is ranked fourth in the world in terms of spread of thalassemia. Research has shown that 8 percent of Azerbaijanis are carriers of the thalassemia gene.

Thalassemia also called Mediterranean anemia, is a form of inherited autosomal recessive blood disorder characterized by abnormal formation of hemoglobin. The abnormal hemoglobin formed results in improper oxygen transport and destruction of red blood cells. It can cause complications, including iron overload, bone deformities, and cardiovascular illness.

Raising a child with thalassemia is both devastating and rewarding as you have to deal with many difficult situations, but at the same time, you will gain a lot of knowledge from dealing with them.

This decease is not the end of the world and parents do not have to fight them alone -- the government has many programs aimed to help them in this fight.

Over the last 10 years significant reforms were carried out in the country to combat such a wide-spread decease as thalassemia. There have been taken many projects aimed at the treatment and diagnosis of the disease and to improve the health of future generations.

In 2005, on the initiative of the President of Heydar Aliyev Foundation Mehriban Aliyeva, the program "In the name of life without thalassemia" was launched. It made possible to achieve serious, significant advances in the diagnosis and treatment of this decease, as well as helped to overcome the needs of patients in the blood and iron-deducing medicines.

Azerbaijani Republican Centre for Thalassemia, created with the support of Heydar Aliyev Foundation, led work in this area to a higher level. An operation of bone marrow transplant, a radical method of treatment of thalassemia began its implementation. President of the Heydar Aliyev Foundation Mehriban Aliyeva and Vice-president Leyla Aliyeva usually visit Children Center, where kids are treated.

Currently, about 2,600 patients, 900 of whom regularly transfused donor blood are registered in the Centre for Thalassemia.

Before 2005, in other words, before the implementation of the above program, there were certain difficulties in connection with the donation of blood, medicines, in the field of information, diagnosis and treatment of thalassemia.

Now, all costs of diagnosis and treatment are paid by the state.

In order to prevent, treat and diagnose thalassemia an Action Plan (in 2010-2015) was developed for the implementation of the state program to combat the decease.

The main goal, of course, is to reduce the number of cases among children with thalassemia.

Before the program there were other important tasks, ranging from public awareness, improving social status of the newborn - thalassemia patients, providing patients with appropriate drugs, extending their lives as a result of the proper course of treatment, preventive measures, and using a radical method of treatment - a bone marrow transplant.

All the obligations specified in the State Program have been implemented at a high level.

The second State program to combat thalassemia in the years 2015-2020 was approved last year. The main goal is the same as in the first program, which also provides prenatal (antenatal) diagnostics.

That is, if both parents are carriers of the gene of thalassemia, prenatal diagnosis is performed. Parents are able to get information about the health of the fetus before the birth of their child.

In accordance with the presidential decree dated June 1, the amendments to the Family Code envisages the compulsory premarital medical examination.

From June 1 till now, 88.000 people have been surveyed and 5.500 of them are carriers of thalassemia gene.

Now, scientists are working to develop a gene therapy that may offer a cure for thalassemia.

Having thalassemia does not limit life opportunities or experiences at all, because after going through many hardships, one gains not only knowledge but also confidence of being a strong person both mentally and physically.

URL: http://www.today.az/news/society/147436.html

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