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LIVING WITH THALASSEMIA: UNDERSTANDING THE DUAL FACETS OF THALASSEMIA INCLUDING PUBLIC AWARENESS AND PATIENT COMPLICATIONS

Razwan Ashraf, Zuhha Khalid, Mubeen Shahzadi, Aeman Nadeem Butt, Toheed Arshad, Mubasshar Abdul Ghafoor, Muhammad Abdullah, Waqar Siddique, Asfia Arooje

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Abstract:

Thalassemia, a genetic blood disorder, remains a significant public health concern, warranting widespread awareness and effective management strategies. This study aimed to evaluate awareness levels and complications associated with thalassemia among a diverse cohort. Data were collected from two groups: 306 respondents for awareness assessment and 100 thalassemia patients for complications analysis.

Awareness of Thalassemia: Among 306 respondents, the majority (75.8%) demonstrated awareness of thalassemia, yet only 21.9% had undergone thalassemia screening. Encouragingly, 73.9% expressed willingness to undertake the test, with 73.2% agreeing on pre-marital screening. While 56.9% recognized thalassemia as a genetic disorder, 86.9% advocated for education about the condition in academic institutions. However, 53.3% were unaware of its complications, underscoring the need for enhanced public health education through seminars and symposia in schools, colleges, and universities.

Complications of Thalassemia: A cohort of 100 thalassemia patients, comprising 44 males and 56 females with an average age under 20, was assessed. Notably, 78% reported low energy levels, and 62% experienced fatigue despite adequate sleep. Additional complications included low hemoglobin levels (68%), anemia (60%), weight loss (28%), and menstrual irregularities among 25% of female patients. Gastrointestinal (29%), respiratory (29%), and sleep disturbances (58%) were prevalent, alongside a history of exposure to toxic chemicals (33%). Iron overload, a common complication due to frequent blood transfusions, necessitated iron chelation therapy to prevent organ damage. Chronic illnesses were relatively rare, with only 8% reporting kidney disease or autoimmune disorders, and 2% had undergone radiation or chemotherapy.

Conclusion: While a significant proportion of respondents are aware of thalassemia, actionable knowledge remains inadequate, as evidenced by low testing rates. Comprehensive educational initiatives are critical for increasing awareness and encouraging proactive measures, including pre-marital screening. On the clinical front, thalassemia patients endure a spectrum of complications, emphasizing the need for integrated care strategies encompassing routine monitoring, blood transfusions, iron chelation, and psychological support. Strengthening healthcare delivery and fostering trust in medical services can significantly improve the quality of life for thalassemia patients.

Future Implications: This research offers valuable insights for healthcare professionals, policymakers, and advocacy groups. It highlights the importance of targeted educational campaigns and resource allocation to mitigate thalassemia's burden. Additionally, the findings can inform policy development and drive advancements in clinical care, ultimately benefiting patients, families, and healthcare systems at large. Further studies are encouraged to explore innovative interventions to improve patient outcomes and raise community awareness.