In November 2017, Samira Sanusi’s tweet of how she got cured of the sickle cell disease went viral, as people congratulated her and also wished her well.
All thanks to her brother, Mustapha, who donated his bone marrow to her. Samira, who was born with the disease is now AA. On the 28th of October, 2019, Samira will be celebrating 15 years of being totally cured of sickle cell.
In a brief chat, Samira talks about the journey so far with Sola Abe of Woman.NG.
Read the chat below
How do you feel about being cured of sickle cell?
It feels amazing, to no longer be held hostage by a brutal disease that once dictated and defined my life.
Sickle cell patients have many rules they need to abide with so as not to trigger their crisis, what was the first rule you broke after getting cured?
Stuffing my face with everything sugar and junk food, and dancing in the rain.
Tell us about growing up as a sickle cell patient
It was hard. My crisis were frequent and I was hospitalized almost every time. It was also confusing, trying to navigate through life and understanding why I’m different from most kids. My whole life revolves around living with the disease, recovering from the constant crisis and in between, attempting to live.
How was the journey to getting cured?
It was long and complicated, but totally worth it. I was lucky to be able to have a bone Marrow transplant, to be able to find a donor who was my match, and most importantly, to have a successful procedure despite the risks and complications.
What are your favorite things to do as an AA person?
Using my new found strength, good health, energy and opportunities to advocate for Sickle Cell Awareness, pre marital counseling, social support and access to health care for Sickle Cell Warriors.
What life lessons has your cure from sickle cell taught you?
Everything truly happens for a reason. I am grateful for the trials that birthed my purpose and calling to serve and inspire.
Tell us about your foundation, Samira Sanusi Sickle Cell Foundation and what inspired its creation
Samirah Sanusi Sickle Cell Foundation helps Warriors with access to health care, drugs and funds for treatments and life changing treatments and procedures. We also work on intensifying awareness on Sickle Cell Anaemia, how to prevent it and how to manage your health or that of your loved one. The inspiration to establish the NGO came from my sister and I’s Sickle Cell journey, getting cured and taking the responsibility to give back, especially to those who are still fighting.
What did you learn working with sickle cell patients in Nigeria?
It’s a lot harder for Sickle Cell Warriors to manage their health in Nigeria. Many can not afford the many medications they’re supposed to take daily, or the constant blood transfusions and hospitalization bills. Many children do not make it to their 5th birthday, those who do are at risk of stroke and other Sickle Cell complications that can target and damage any organ or part of the body. There’s need for the government, organizations and individuals to work together in ensuring unborn children are spared from this avoidable pain, and those living with the disease should be able to access all the management and treatment options they need to live a healthy life.
Sickle cell disease can be a very difficult one, what advice do you have for sufferers?
Live out loud, despite all the odds.
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