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It's deemed the world's most common genetic disorder, but why is sickle cell disease still not fully understood in communities where it's very prevalent. The Real-Life Stories of Sickle Cell - A Global Collaboration presents stories from different parts of the world to enlighten us about the effects of this condition. Stories from sickle cell warriors, caregivers, healthcare professionals, and advocates capture these people's understanding and awareness of Sickle Cell Disease. You will read stories of hope, resilience, frustration, and sadness as we strive to bring these stories to the world.…mehr

Produktbeschreibung
It's deemed the world's most common genetic disorder, but why is sickle cell disease still not fully understood in communities where it's very prevalent. The Real-Life Stories of Sickle Cell - A Global Collaboration presents stories from different parts of the world to enlighten us about the effects of this condition. Stories from sickle cell warriors, caregivers, healthcare professionals, and advocates capture these people's understanding and awareness of Sickle Cell Disease. You will read stories of hope, resilience, frustration, and sadness as we strive to bring these stories to the world. Although being the most common disorder, what this project taught us was that even people living with sickle cell disease do not get adequate treatment in most parts of the world. Sickle cell warriors are still stigmatised in different parts of the world. That sickle cell warriors would rather hide from peers or employers that they are affected, fearing the treatment they may receive. We have learned of warriors bearly getting adequate treatment because it's simply not available in their area. These stories will give you that understanding of how much we still need to do as a sickle cell community, to double our efforts to support people impacted from different parts of the world, especially developing countries.
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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.