Samira Haruna Sanusi, the founder and president of Samira Sanusi Sickle Cell Foundation and an award-winning author, has described living as a Sickle Cell warrior as being hectic after surviving a seven-year stay in a hospital and 28 surgeries.
Samira praised her brother Musty Sanusi who donated his bone marrow to save her life.
In our encounter, the 30-year-old who wrote two books on sickle cell, ‘S is for Survivor’ and ‘I Wrote This For You’, said that her post-traumatic experience after suffering from sickle cell complications for more than a decade has opened her eyes to the simplicity of life.
“The magnitude of my experiences, the level at which they changed and shaped me, and the impact they left is something else.
“Sometimes I find it hard to believe what all I survived,” she said.
“Many a time, I tend to be obsessed about giving my pain meaning, fulfilling my purpose and working on rebuilding my life, redefining myself and my identity outside of Sickle Cell Anemia.”
When asked about her inspirations as a writer, she said “I never set out to be a writer, didn’t even know I could be one.
“I like to believe that writing found me, especially at a point in my life where I desperately needed an escape and a way of expressing myself.
“It comes naturally to me and I constantly have a sudden and intense urge to write.”
She explained how spilling her heart and pouring her soul on a blank page eases her day to day mundaneness of life.
“I’m a night owl and write better at night, which makes the process easier since I don’t have to deal with distractions or other responsibilities that might interfere,” she stated.
While giving detailed explanations of her writings on sickle cell, she said “I write to remind myself and others that it is impossible to experience trauma, loss, grief and survive it.
“It is a true-life account of my ordeal with sickle cell, which included a seven-year stay in a hospital and undergoing 28 surgeries.
“It’s possible to be seen as strong, brave and unbreakable, yet simultaneously deal with insecurities, doubt, healing, self-discovery and growth.”
She pointed out that human experience is shared not only through celebrating success stories but also through paying tribute and giving credit to the work, tears and sweat that births “our triumphs”.
“To all with the stereotype that Sickle Cell patients can’t do anything, everyone can do something, regardless of the cards they’re dealing with.
“We are all born with a purpose and no one is useless.
“To assume that Sickle Cell Warriors and people living with health challenges can’t amount to nothing, is ridiculous and shallow,” she noted.
She urged everyone to give Sickle Cell Warriors the chance, understanding, patience and support they need and watch them thrive.
She advised sickle cell warriors to listen to their bodies as it is their first home and must be taken care of.
She added that they need to understand their triggers and find a lifestyle that works for them and gives them opportunities to do more living and less surviving or barely hanging by a thread.
While responding to a question on her foundation, she said “Samira Sanusi Sickle Cell Foundation is committed to supporting the Nigerian government in accelerating provision for management and treatment of sickle cell complications.
“It is also meant for enlightening citizens about the disease, and most importantly, making informed decisions to avoid more sickle cell births.
She said the foundation was initiated 5 years, with the aim of consistently providing financial aid, counselling and support to low-income families living with Sickle Cell Anaemia.
She added that they have done free genotype testing and counselling to communities around the north, in an effort to enlighten and sensitize people in the hopes of reducing Sickle Cell births in our communities.
She expressed her satisfaction with the foundation saying “the impact is immeasurable.
“Our work ensures that vulnerable patients, especially children from low-income families can access and afford medical care, treatments and life-changing surgeries.
“We have also created a community of warriors and their parents/families/caregivers which continue to serve as a support group of people who understand each other’s pain and struggles and as a reminder that they are not alone.”
She said the foundation hopes to grow, reach more communities and people by spreading awareness and delivering aid, especially at the grassroots.
She said: “Our hope is that the advocacy will inspire and challenge individuals, organizations and the government to take Sickle Cell prevention, management and treatment seriously.”
