The Many Faces and Lives of Sickle Cell - A Global Collaboration - Nsofwa, Agnes
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What is Sickle Cell Disease? Who does it affect? As one of the world's most common genetic disorders, why is it that sickle cell disease is also deemed to be one of the world's most neglected, under-researched and under-funded genetic diseases? Gain insight into Sickle Cell Disease through the eyes of 30+ complete strangers of all ages, cultures, language backgrounds and from all walks of life hailing from Africa to Australia and beyond. They have come together to share common but also uniquely personal experiences. Follow the lives of sickle cell warriors, caregivers and advocates as they…mehr

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Produktbeschreibung
What is Sickle Cell Disease? Who does it affect? As one of the world's most common genetic disorders, why is it that sickle cell disease is also deemed to be one of the world's most neglected, under-researched and under-funded genetic diseases? Gain insight into Sickle Cell Disease through the eyes of 30+ complete strangers of all ages, cultures, language backgrounds and from all walks of life hailing from Africa to Australia and beyond. They have come together to share common but also uniquely personal experiences. Follow the lives of sickle cell warriors, caregivers and advocates as they navigate their way through love, loss, pain and an array of trials and tribulations of living with and advocating for Sickle Cell Disease. These are their stories of courage, heartbreak, resilience, and hope.
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Autorenporträt
Agnes is an entrepreneur, the creator of different Olana accessories and the Olana doll, a comfort doll for children living with a chronic illness. A global health advocate and consultant specialising in Sickle Cell Disease (SCD) & Mental Health, Agnes is also an author and book publisher with over four books under her company Olana's World Publishing House. Agnes is the creator of different initiatives to enhance sickle cell awareness around the world. Her world changed when her daughter was diagnosed with sickle cell anaemia, starting with changing her career from the Business world to becoming a Registered Nurse. Agnes founded Australian Sickle Cell Advocacy Inc, the only sickle cell organisation predominantly supporting people impacted by SCD in Australia. Agnes is also the initiator of the first-ever multi author book containing23 real-life stories from people impacted by SCD from over 20 countries. The book The Many Lives and Faces of Sickle Cell- A Global Collaboration was published in June 2022. Today Agnes' daughter has been cured after being the first child to receive a Bone Marrow Transplant to cure SCD in Australia. Her hope is that one day there will a cure for SCD for all Sickle Cell Warriors. Agnes holds a Diploma of Accounting, Bachelor of Business Administration (Edith Cowan University) and a Master of Nursing from University of Sydney. Agnes is currently pursuing a Doctor of Philosophy (PhD) specialising in a topic on sickle cell disease in Australia.