The Story About Sickle Cell Disease and Asthma
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Meet Olana, a bright and courageous 12-year-old girl with a powerful story to tell. Olana is back sharing her story when she was 7 years old, living with both Sickle Cell Disease and asthma. Her days were often filled with chest pain, breathless moments, aching bones, and too many missed playdates and school days. But even through the hardest times, Olana kept her spark and her smile. And right beside her through it all was her big brother, Lana-her superhero in disguise. This book is a celebration of strength, healing, and the powerful bond between siblings. Lana and Olana's story reminds young readers that even in the toughest moments, love and family can light the way. Take a deep breath, turn the page, and join Lana and Olana on their inspiring journey to joy.
Nsofwa, Agnes M.: - Agnes Nsofwa is the founder of the Australian Sickle Cell Advocacy Inc. (ASCA), an organisation dedicated to raising awareness and improving the lives of people affected by sickle cell disease (SCD) in Australia. Under her leadership, ASCA has become a vital platform for patients and families, particularly within multicultural communities, offering support, resources, and advocacy for better healthcare services and policies. Her work is driven by personal experience. Born in Zambia, where sickle cell is more common, Nsofwa witnessed the stigma and lack of proper healthcare faced by those with the disease. When her daughter was later diagnosed with SCD in Australia, she realised the urgent need for awareness and support in a country where knowledge of the condition remained limited. This inspired her to establish ASCA to bridge the gap and empower affected families. Beyond Australia, Nsofwa has also championed sickle cell advocacy on the global stage through conferencesand international networks. Her efforts have helped raise the profile of SCD, ensuring individuals living with the condition receive recognition, support, and better care.
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