Raising Awareness for Thalassemia on World Thalassemia Day

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.

About 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.

Facts about Thalassemia

• Thalassemia, a genetic disorder caused by an abnormal haemoglobin gene, affects a significant portion of the global population, with around 7% of individuals carrying this gene.
• Low and middle-income countries bear the brunt of this disorder, with 80% of those affected residing in these nations.
• India, in particular, ranks high on the list, with approximately 4 million Thalassemia carriers and 1,00,000 patients suffering from the condition.
• Unfortunately, despite the severity of this disorder, less than 20% of those with beta-thalassemia receive timely treatments like blood transfusions and iron chelation therapy.

Causes of Thalassemia

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.

Symptoms of Thalassemia

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:

• Pallid skin complexion
• Deformities in bone structure
• Persistent fatigue and darkened urine
• Lack of strength
• Reduced rate of growth and development
• Enlarged abdominal area

Management of Thalassemia

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.

• In cases of more severe Thalassemia, blood transfusions are often necessary and may need to be repeated every few weeks. However, it is crucial to be aware that these transfusions can lead to an excess build-up of iron in the blood over time, which can cause damage to vital organs such as the heart and liver. Therefore, it is vital to closely monitor iron levels and take steps to mitigate any potential harm.
• Chelation therapy is a well-known medical treatment that employs chemical agents to remove toxic metals from the bloodstream. This therapy is particularly effective in addressing the issue of excess iron, which can arise from frequent transfusions. Thalassemia patients who do not receive regular transfusions can also experience an accumulation of excess iron. Fortunately, chelation therapy offers an effective remedy for this potentially hazardous condition.
• Using stem cells for transplantation is a feasible option in certain situations. It can alleviate the need for lifelong blood transfusions and iron overload medications in children suffering from severe thalassemia. The procedure involves receiving stem cell infusions from a compatible donor, usually a sibling.

Living With Thalassaemia

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.

History of World Thalassemia Day

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.

Importance of World Thalassemia Day

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.

World Thalassemia Day 2023 Theme

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.

Takeaway Message

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

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References

• https://www.ncbi.nlm.nih.gov/books/NBK22200/
• https://www.cdc.gov/ncbddd/thalassemia/index.html
• https://www.fda.gov/news-events/press-announcements/fda-approves-first-cell-based-gene-therapy-treat-adult-and-pediatric-patients-beta-thalassemia-who