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8 months ago

Educating community about managing a lifelong ailment

WANA arranged a day-long meet up event for thalassemia patients and parents in Dhaka on Friday
WANA arranged a day-long meet up event for thalassemia patients and parents in Dhaka on Friday

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Thalassemia, a genetic blood disorder, often remains overlooked in health discussions, yet its impact on individuals and families is profound. WANA, soon to be known as the Bangladesh Thalassemia Patients and Parents' Welfare Association, stands as a beacon of support and advocacy for those navigating this condition. But what exactly is thalassemia, and why does it warrant our attention?

Thalassemia, a complex and lifelong ailment, needs regular blood transfusions for survival, bringing forth a number of challenges in social, emotional, and financial aspects. To bring this pressing issue to the forefront, WANA recently hosted a day-long significant event featuring esteemed experts, informative seminars, and supportive initiatives on March 08 at Bangladesh Film Archive Auditorium, Agargaon, Dhaka.

Prominent figures like Sultana Nadira, MP, stressed the urgent need for widespread awareness and governmental support. Dr Mohammad Sorowar Hossain's research uncovered poignant insights into the psychological toll faced by families affected by thalassemia.

Yet within these challenges lie opportunities for progress and mobilisation. Prof Manzur Morshed emphasised the critical importance of improving access to safe blood transfusions, while Prof Waqar Ahmed Khan highlighted systemic shortcomings in treatment and prevention efforts. Dr Tasnim Ara echoed the call for proactive measures, emphasising the significance of early testing and educational outreach.

Dispelling prevalent myths surrounding thalassemia is crucial. For example, people might believe that these patients can't get married which is untrue and superstitious. Contrary to misconceptions, individuals with thalassemia can lead fulfilling lives, pursuing education, careers, and starting families with appropriate support and understanding.

Looking ahead, WANA unveiled an ambitious roadmap, comprising various initiatives aimed at raising awareness, fostering education, and advocating for policy reforms. By forging partnerships with medical professionals, community organisations, and policymakers, they seek to empower individuals and families affected by thalassemia.

Addressing thalassemia requires collective action and unwavering commitment. Through education, advocacy, and compassionate support, we can pave the way towards a more equitable and inclusive future for all affected by this condition. Thalassemia may present daunting challenges, but with unity and determination, we can overcome them, illuminating the path towards a brighter tomorrow.

The writer is a research associate at BIDS.

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