After 6 years in a wheelchair, 28 surgeries, chemotherapy and a bone marrow transplant, Samira became cured of Sickle cell anaemia. All thanks to her brother, Mustapha, who donated his bone marrow to her. Samira Haruna Sanusi, who was born with the disease is now AA. On the 28th of October, 2020, Samira celebrated 16 years of being totally cured of sickle cell.
Read more about Everyday Heroes
Samira Haruna Sanusi is a Sickle Cell Awareness advocate and WASH advocate. She is the founder of the Samira Sanusi Sickle Cell Foundation, which builds awareness and supports hundreds of people with medical bills. She’s also the co-founder of WAFSLI Nigeria (Water for Sustainable Living). She is the author of ‘S is for Survivor’, a memoir about her personal experiences with Sickle Cell Anaemia. Summarily, the above is what makes her an Everyday Hero. The given resilience to advocate, fight for and speak up for those living with that health condition.
About The Samira Sanusi Sickle Cell Foundation
Her battle with Sickle Cell Anemia is what inspired her to start the Samira Sanusi Sickle Cell Foundation to help people living with the disease. The foundation raises funds for organizations and clinics that provide Sickle Cell patients with care, aid, and treatment.
They organize awareness programs in several parts of Nigeria to educate and sensitize people on the disease. This awareness covers how the disease impacts the lives of sufferers and caregivers alike, its complications, and the importance of genotype testing before deciding to have children. Its focus also includes creating awareness on the cure for Sickle Cell disease and finding ways to make it accessible for patients in Nigeria.
The foundation is committed to supporting the Nigerian government in accelerating provision for management and treatment of Sickle Cell complications, as well as enlightening citizens about the disease, and most importantly, making informed decisions to avoid more Sickle Cell births.
The Samirah Sanusi Sickle Cell Foundation helps warriors with access to health care, drugs and funds for treatments and life-changing treatments and procedures. They also work on intensifying awareness on Sickle Cell Anaemia, how to prevent it and how to manage the health or that of another patient. The inspiration to establish the NGO came from her and her sister’s Sickle Cell journey, getting cured and taking the responsibility to give back, especially to those who are still fighting.
Samira On Misconceptions About Sickle Cell Disease
‘The misconceptions of people living with Sickle Cell Disease (SCD) are many and have become stigmatizing to warriors living with the disease. Many people believe warriors do not grow up into adulthood, or that if they do, they eventually outgrow the disease.’
‘Many people including healthcare providers see warriors as attention or drug seekers who are trying to feed a painkiller addiction. However, with limited pain management options, warriors are forced to rely on strong painkillers. Now the consistency of the pain crisis sometimes means the patient has to be on pain medication for a long period of time. More so, the disease is still considered as a death sentence by so many people.’
Samira: Feelings on Experiences
Samira Sanusi believes you can still have dreams, goals and ambitions while living with sickle cell disease.
Sickle cell has affected her personal life in great ways -good and bad. She has had 28 surgeries, collected a lot of scars, dealt with health complications related to SCD and a sizable amount of PTSD. At the same time, this disease has been the best thing that has happened to her according to her. Without which she says she wouldn’t be who she is today.
She Leads Africa
Featured Image Source: African Newspage
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