Arafa Said was diagnosed with sickle cell disease when she was 8 months old. Since then, she has been fighting through all of the challenges of life with this inherited condition. For the past decade, she has devoted herself to improving the lives of her fellow Tanzanians with sickle cell and other chronic diseases. She is the founder of The Sickle Cell Disease Patients Community of Tanzania, which was the very first sickle cell advocacy organization in Tanzania. She is also the Tanzanian Representative for the East African Sickle Cell Alliance. Through these organizations, she provides social support, public advocacy, and education for sickle cell patients around the country. She also aims to help all sickle cell patients obtain health insurance and to ensure stable access to quality healthcare in Tanzania. Arafa was the 2017 International Sickle Cell Advocate of the Year, awarded by Sickle Cell 101 in the United States. She has also been a patient representative at conferences and workshops for medical researchers and professionals in Tanzania, Kenya, Nigeria, Ghana, Tunisia, and the United States. Her biggest advocacy aim is to move toward a sickle cell-free Africa in future generations. In the meantime, she promotes healthier, stronger, and more supported living with sickle cell disease. Specific objectives include country-wide pre-marital sickle cell testing, promoting literacy for young people with sickle cell, and increasing the standards of sickle cell care. Through instagram, twitter, facebook, youtube, and other social media platforms, she is able to build a large digital community that can work together toward these aims. Her digital media advocacy also offers inspiration, education, and advice for Tanzanians living with sickle cell disease. Her hope is that her efforts will lead to a brighter future for the next generation of Tanzanians.
Dar Es Salaam, 23
Arafa works tirelessly for Tanzanians who have been diagnosed with sickle cell disease. Before she started this work, sickle cell was hardly known in Tanzania. But her voice has helped to break the silence. In addition to sharing her story to raise awareness, Arafa helps obtain health insurance for patients and provides support wherever needed. — Rebekah
I’m a Patient Leader