By Nikhil Ambatkar | 8th May 2023
May 08 marks an annual observance of World Thalassemia Day, aimed at raising awareness about the disease and recognising the hardships faced by those affected by it. The day serves to highlight the challenges and struggles that patients encounter in their daily lives, as well as to promote understanding and empathy towards their condition. Through this remembrance, we aim to promote greater solidarity and support for those affected by thalassemia.
Thalassemia is a hereditary blood disorder that hinders the body’s ability to produce adequate amounts of haemoglobin, resulting in the weakening and destruction of blood cells. This ailment is categorised into two types, namely alpha and beta, with subcategories such as Thalassemia minor, intermedia, and major.
In recognition of the tireless efforts of medical personnel, scientists, and doctors who have dedicated their lives to improving the quality of life for individuals battling this disease, World Thalassemia Day is celebrated worldwide.
Hereditary in nature, Thalassemia has a genetic origin and is passed down from one’s parents. However, advancements in medical technology have enabled early testing before a child’s birth, allowing for prompt action and management. Despite the availability of this option, it is essential to note that Thalassemia cannot be prevented due to its inherited nature.
The manifestation of Thalassemia is multifaceted, contingent on the specific type and severity of the ailment. The following are some commonly observed symptoms and manifestations:
Mild types of thalassemia trait do not necessarily call for any treatment. However, various treatment options are available if you are experiencing moderate to severe thalassemia.
The growth rate of thalassemia patients is affected by their low haemoglobin levels and anaemia. Therefore, they need to maintain a well-balanced diet. It’s recommended to consult with a doctor regularly to obtain the necessary medications and vitamins to prevent any further complications.
On May 8, 1994, the inaugural World Thalassemia Day, also known as International Thalassemia Day, was announced by Panos Englezos, the Thalassemia International Federation’s (TIF) founder and president. He founded this day in honour of his son George and the countless individuals who have braved the challenges of this condition.
World Thalassemia Day presents a unique opportunity for private and governmental organisations to engage in public education and healthcare campaigns for pregnant women, such as genetic screening, counselling, and prenatal diagnosis.
This day also enables policymakers to devise new strategies or policies geared towards thalassemia patients, such as providing free blood transfusions or financial support. By leveraging this day, we can make significant progress in raising awareness about thalassemia and enhancing the lives of those affected.
In 2023, the World Thalassemia Day Theme focuses on enhancing the education and care for individuals with thalassemia, to bridge the existing care gap. Building on the previous year’s “Be Aware. Share. Care” campaign, this year’s initiative emphasises the importance of quality disease education, prenatal screening, and symptom management to increase the knowledge and morale of those living with thalassemia, particularly in rural areas.
The goal is to provide better access to care and education, thereby improving the lives of those affected by this condition.
In conclusion, World Thalassemia Day serves as a reminder of the ongoing battle that individuals with thalassemia face daily. By raising awareness about the disease and recognising the hardships encountered by those affected by it, we can promote greater understanding, empathy, and support for the patients and their families.
Our collective responsibility is to continue spreading awareness and supporting research efforts to find a cure for thalassemia. Let us stand in solidarity with those affected by thalassemia and work towards a brighter future for all.
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Frequently asked questions
Thalassemia major affects many children in India, with estimates ranging from 100,000 to 150,000 cases. Additionally, approximately 42 million people in India are carriers of the ß (beta) thalassemia trait. Every year, between 10,000 and 15,000 babies are born with thalassemia major, presenting a significant challenge for the healthcare system.
The Food and Drug Administration has given the green light for a revolutionary approach to treating patients suffering from Beta-thalassemia, a genetic blood disorder that requires regular blood transfusions. This new cell-based gene therapy is the first of its kind and offers hope to adult and pediatric patients. The approval of this treatment is a significant milestone in the medical industry and could transform how we approach and treat genetic disorders going forward.
We must step up and offer our blood to aid those with thalassemia. We must not disregard the immense difficulty those suffering from this condition face. By donating blood, we can make a significant impact and save lives.
In 2023, the theme for International Thalassaemia Day will focus on strengthening education to bridge the gap in thalassaemia care. The slogan, “Be Aware. Share. Care,” urges individuals to learn about the disease, spread awareness, and take action to support those affected. This initiative aims to improve access to quality healthcare for thalassaemia patients worldwide.
The observance of this day brings attention to the difficult journey of individuals afflicted with Thalassemia, a hereditary blood ailment which impedes the body’s ability to generate adequate amounts of haemoglobin. This affliction leads to depletion and degeneration of the blood cells, resulting in a debilitating state for the sufferer.
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