You can tell Samira Haruna Sanusi is a sickle cell advocate before you even meet her. Hanging on the door of her office, is a red, black and yellow sign that boldly says ‘STOP- Do You Know Your Genotype?
For those who haven’t met her in person, let alone visited her office however, can probably tell you that they’ve heard of Samira on one social media site or the other.
Be it Tumblr, Instagram, Facebook, or LinkedIn, Samira Sanusi is on a daily basis on one end of a device using social media marketing platforms- the fastest means of reaching out to hundreds of people at a time- to achieve one painstaking goal.
And what goal is that, you ask? The goal to break the sickle cycle.
‘I didn’t know sickle cell anaemia was a genetic disorder, I just knew I was different,’ said Samira, as she recounted her childhood experiences as a sickle cell patient.
Samira Sanusi is the president of Samira Sanusi Sickle Cell Foundation. She was diagnosed with Sickle Cell Anaemia at just eight months old, and for the next fifteen or so years, she endured endless visits to hospitals, crisis, pain in her legs and chest, and not attending school like other kids.
‘I went from being a normal teenager living at home to all of a sudden living in a hospital. There were days I couldn’t even remember what home used to look like,’ Samira explained. ‘The only connection I had to the outside world was the television.’
While she was just a teenager, Samira suffered from septic arthritis and osteoporosis, which rendered her immobile for six years. Stuck in a wheelchair, Samira visited countless hospitals, and at some point was told she would never be able to walk again.
Her father, relentlessly, found a hospital with doctors who thought differently in Austria. In 2004, Samira Sanusi underwent a bone marrow transplant. The process was long, painful, and required a Human Leukocyte Antigen (HLA) identical sibling to serve as the bone marrow donor, and having a sibling of that description was a rare chance of 30%.
Miraculously, her brother, Mustapha, was a match. After a successful operation, Samira Sanusi became sickle cell free.
Mustapha Sanusi was only 12 when he became his sister’s donor.
‘I was thrilled because it was an opportunity only a few get in life. It was something that money can’t buy, even though there are donors out there,’ he said.
‘I was so young, so I was excited about being punctured with needles,’ he added. When asked if he would ever be a donor to his sisters, Mustapha said he would do it again.
In 2009, after physiotherapy, rehabilitation, and hip replacements, Samira could walk again. She decided she wanted to come back to her motherland, and also start a foundation that would aid sickle cell patients.
‘I always dreamed about having a business empire but I didn’t want to make money any more, I just wanted to be of service to people,’ Samira said.
‘We didn’t know the first thing about starting a Non Governmental Organization and I didn’t know where we were going to get the money, but I just knew that this was something I needed to do,’ she explained.
Another reason that led Samira to go ahead with the foundation was the realization that Nigeria has the highest number of sickle cell patients in the world.
‘As bad as it was I realized I had it easier than others. My family was able to afford medical treatment and get the help that I needed but in Nigeria you find a lot of people who can’t even afford the daily medication they’re supposed to be taking.
‘Living with sickle cell you spend at least N30-50,000 on drugs in a month. And you’re supposed to be on a special diet that consists of protein, vegetables and fruits and stuff like that,’ she noted.
‘I didn’t want people to go through the pain that I went through. This is something we can prevent if we just know our genotype,’ Samira said.
Samira Sanusi Sickle Cell Foundation (SSSCF) was established in 2014, on the same day her sickle cell novel “S is for Survivor” was published. Since then, the SSSCF had been creating awareness, usually through social media, and advocating for the end of sickle cell anaemia by holding events, talks, and seminars around the country.
‘Social media has helped my initiative by bridging the gap between I and the sickle cell patients who need help, awareness or counselling,’ Samira said.
‘It has also given me a platform to reach other sickle cell and health related organizations as well as supporters and donors who have contributed to the success of our campaigns and projects by consistently doing social media marketing where they have a huge following and audience,’ she added.
Samira Sanusi uses her voice along with social media platforms to appeal to people to know their genotype. While it is easy for those in the city to know about Samira’s awareness campaign, Samira’s goal is to also reach the nooks and crannies of villages.
Through social media marketing, and other traditional media like the radio, Samira Sanusi says she can achieve that. On several occasions, she has had people reach out to her and tell her they heard about her through someone who saw her tweet or post.
‘I try to spread awareness most of the time because you never know what information will reach who, and how desperately they need to know,’ Samira said.
Having been in Israel to improve her mobility prior to now, Samira had not properly planned an event for World Sickle Cell Day. It was a last minute thing, but miraculously the SSSCF was able to hold blood drive in Bauchi and free genotype campaigns in Kaduna, Katsina, and Kano recently as part of its events to mark the 2015 World Sickle Cell Day.
Awareness was created especially through social media marketing, as scores of posters and tweets and posts were shared with the help of her huge following, advocates, and supporters. It was a challenging feat, but over 300 people came out to donate blood and check their genotypes.
‘The blood will be going to sickle cell patients who usually need blood transfusions,’ Samira said.
One thing Samira says keeps her going are the messages and calls she receives from people who have heard her create awareness about sickle cell on radios or online and call to seek help, moral support or counselling.
‘Alhamdulillah we’ve been able to make a lot of impact and people are able to benefit from our services,’ she said.
‘Thanks to social media marketing we have a way of reaching out to people who are far away, and if they don’t have access to social media they know one person who does,’ Samira added.
‘People hear about it and automatically become advocates without even knowing it. They want to spread the message of awareness,’ she further stated.
Without social media marketing, Samira believes it would have taken thrice as much dedication to get her message across.
Samira is not just a social media advocate, she’s a real life warrior who is changing the lives of those around her.
‘I am AA but if you look at all my medical records the first thing they write about me is sickle cell anaemia patient. It is my identity. In a way I’m glad because I am everything I am because of it. Without that level of pain and suffering I would not really be able to help anyone,’ she said.
Her foundation continues to aid sickle cell patients and call for the end of sickle cell anaemia by simply knowing your genotype and making the right marital decisions for the sake of your children. Samira Haruna Sanusi is just getting started on her journey.