Samira Haruna Sanusi is a Nigerian writer and Sickle Cell awareness advocate. Samira is the President of the Samira Sanusi Sickle Cell Foundation, an Abuja-based NGO. She is also the author of “S is for Survivor”, a memoir about her personal experiences with Sickle Cell Anemia and getting cured. Her upcoming book titled “I Wrote This For You” is a collection of prose, poetry, philosophical quotes and short essays which will be published later this year.
In this interview, She Leads Africa fellow Tonye Setima-Benebo chats with Samira Sanusi on living with Sickle Cell disease. After 6 years on wheelchair, 28 surgeries, chemotherapy and a bone marrow transplant, Samira has learned a lot from her life struggles and is eager to share her testimonies with the rest of the world.
Read more on Samira’s story of hope, survival, and strength below.
What are some of the misconceptions of people living with 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.
Who were your greatest supporters during your crisis?
My greatest supporters were my family. They have seen me struggle with the crisis, limitations, and treatments. Being the ones who are always there means they really see the effect and understand the magnitude of the disease. Friends were also a great support and offered help in their own little way.
How has Sickle Cell affected your personal life?
Sickle Cell has affected my personal life in great ways -good and bad. I’ve 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 me, without which I wouldn’t be who, I am today.
Can you tell us what you do on a daily basis to stay healthy and out of the hospital?
A typical daily routine includes taking my daily medication, staying hydrated by drinking at least 2 litres of water, avoiding stress and strenuous activities and adjusting to weather conditions and other factors that might trigger a crisis.
You wrote a book “S is for Survivor”, what was your intention for the book?
My intention of writing “S is for Survivor” was to tell a story once painful and untold, and to make sense of my past and pain. Books were my toys and companions during my childhood, and so many stories I read in books connected me to human experiences that made me feel less alone.
In the end, I wanted to do that, to be able to touch lives and reach out to people who’ll read my book and have hope or feel less alone in their journey.
Tell us about your foundation.
My battle with Sickle Cell Anemia is what inspired me 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.
We 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 care-givers 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.
What would you say to a teenage girl living with Sickle Cell disease?
To a teenage girl living with SCD, I would say, you are more than a disease and stronger than you think. You can still have dreams, goals, and ambitions.
It might not look like the picture in your head, or happen at the same pace as everyone, the important thing is to live fully and out loud and fight against all the odds.
What is your best memory so far?
My best memory so far would be getting cured of Sickle Cell Disease, the day felt like my birthday, a new beginning to a pain-free, health complications and limitation free life with endless possibilities.
I don’t think anything can ever top that, being cured of a disease that is still considered as a death sentence.
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