World Thalassemia Day.
Sunday, May 8th is World Thalassemia Day. A group of inherited diseases where the primary characteristic is chronic anemia.
Beta-thalassemia is caused by certain defects in genes that regulate the production of hemoglobin, the protein responsible for the transportation of oxygen throughout the body. Continued blood transfusions are required, usually once every 20 days.
In high-risk couples, where both parents are carriers in good health, one in four children may be born thalassemic. For a preventive diagnosis, for some years is available the celocentesi, a test of prenatal diagnosis that is able to identify in couples at risk, already from the fifteenth day from the pregnancy test, the state of health of the fetus and the presence or not of the disease.
In Italy, healthy carriers of beta-thalassemia represent approximately 5% of the population (2,500,000) and the number of patients approximately 7,000, including 5,000 with the main form. The distribution of thalassemia is not uniform: more than half of the patients are in Sicily (2700) and Sardinia (1100).
By the end of the 1990s, the average age of patients was 25 to 30, while today, thanks to advances in scientific and medical research, this disease is increasingly treatable.
On the occasion of World Thalassaemia Day, an international conference will take place in Palermo on 8 May, in the presence of representatives of institutions, clinicians and patients. In the coming weeks, there will also be five web-based forums for patients and caregivers.
#thalassemia #betatalassemia #anemiamediterranea #anemia #health #prevention #diagnosis
