International Thalassemia Day (ITD) is observed every year on May 8, to spread awareness about thalassemia, a rare blood-related ailment, among central wellness associations, worldwide policymakers, chief healthcare professionals and the general public. This global campaign was initiated in 1994 by the Thalassemia International Federation (TIF), which has worked in a unified alliance with the World Health Organisation (WHO) since 1996, to conduct various key activities on the annual occasion of ITD. The primary objective of International Thalassemia Day is to ensure optimal medical care for all affected patients, besides remembering, honouring the lives lost due to the disease and constantly striving to find an affordable, easily available and effective cure for thalassemia.
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The theme of International Thalassemia Day 2021 is, “Addressing Health Inequalities Across the Global Thalassaemia Community”, which aims to underscore the substantial disparities in providing requisite healthcare services to afflicted patients in different parts of the world. This problem became considerably magnified owing to the global COVID-19 pandemic that has upended people’s lives for the past year. In this regard, ITD targets to record the present level of medical aid delivered to thalassemia patients, document the unmet needs and take proactive measures to resolve current issues and guarantee the best healthcare amenities for all distressed individuals. This includes formulating key strategies for enhancing clinical treatment involving blood transfusions, offering medical education to paramedical staff to nurse thalassemia patients and providing ample support to caregivers and family members of those affected.
Thalassemia is fundamentally an inherited blood-linked illness, which is passed on from either one or both parents with faulty genes, to the offspring. It occurs when the genes that synthesize haemoglobin - a vital protein in red blood cells (RBC) that transports oxygen to other tissues, organs, are either missing or impaired. People with thalassemia lack sufficient haemoglobin, thereby resulting in hampered RBCs and anaemia. Thalassemia is of two types, alpha-thalassemia and beta-thalassemia, depending on whether the alpha-globin chain or the beta-globin chain in haemoglobin is defective. Since thalassemia is acquired from parents with deficient genes in children right from a very young age, the afflicted individuals and their families tend to face discrimination from the community they reside in and are even overwhelmed with many misconceptions about the condition. It is hence very important to take dynamic efforts, such as activities conducted as part of International Thalassemia Day, to inculcate verified knowledge about the disease and make the society aware and inclusive to affected patients.
General Myths And The Relevant Facts Pertaining To Thalassemia:
Myth #1:
Thalassemia patients are always exhausted and dull.
Fact:
Not true. If affected patients are supplied with optimal medical care, they can efficiently overcome fatigue from anaemia, lead a normal healthy life even into adulthood and become successful in business, engineering, law, fine arts or any other profession/field of work.
Myth #2:
There is no cure for thalassemia.
Fact:
False. Bone marrow transplantation is available as an effective cure for thalassemia patients. However, the procedure is prone to complications and health risks, apart from being very expensive and requiring the Human Leukocyte Antigen (HLA) matched donor bone marrow from a sibling.
Myth #3:
Thalassemia carrier parents will always have children with the disease.
Fact:
This is incorrect. Only when both parents carry faulty haemoglobin-linked genes, there is a 25 per cent chance that the child will be born with thalassemia. In cases where only one parent has defective genes, the condition of thalassemia is not passed on to the child.
Myth #4:
No proven and effective treatment is available for thalassemia.
Fact:
This statement is highly inaccurate. When supplied with advanced medical treatment protocols of adequate blood transfusions and iron chelation therapy, thalassemia patients can live a long and healthy life. These remedial procedures incur step costs, but raising awareness among society will encourage more healthy individuals to donate blood and meet the demands of thalassemia patients.
Myth #5:
Thalassemia is an unavoidable inherited disorder that cannot be prevented.
Fact:
Completely erroneous. Thalassemia, although a genetic condition, is actually 100 per cent preventable. This condition can be averted by couples undertaking genetic screening before conception or in the early stages of pregnancy, then discussing and understanding the results, further treatment options, in counselling sessions with medical professionals.
