I come from Katsina state, Nigeria and I’m the second born out of 11 kids. I completed my high school education in Vienna, Austria and right now I’m a final year Business Administration with a minor in Leadership student from Trident University International.
I started an NGO called Samira Sanusi Sickle Cell Foundation because my sister and I were born with Sickle Cell Anaemia. Living with the disease almost destroyed our lives, completely! I suffered from a lot of bone, joint and organ damages as complications from the disease, which left me in a wheelchair for 7 years and sent me on a journey to different countries and continents in search of good medical treatment and a cure. After being told I was running out of time and my legs had to be amputated, I realized there was strength in me I never knew I had. I was determined to fight, and win. And I did! My foundation is a thank you note to God, for gratitude, survival, cure, hope and never leaving my side. After seven years away from Nigeria, I came back and realized that so many people were living with the same disease but weren’t as fortunate as I was to find good medical treatment or even gain access to a cure. In fact, people still believe there is no cure for Sickle Cell Anaemia!
The main objectives of my foundation are to provide aid to patients especially those living in rural areas and finding it hard to keep up with day-to-day medical expenses. Sickle Cell Disease (SCD) is something you live with for the rest of your life, unless you’re fortunate enough to afford a Bone Marrow Transplant (BMT) and find a donor match. I knew I couldn’t help cure everyone, so I thought of finding ways to help our Sickle Cell Warriors manage their pain, lifestyle and health. The foundation also offers genetic counselling and organizes awareness campaigns especially on radio and TV programs with one message: Know Your Genotype. We also identify patients or Sickle Cell clinics that need help, and raise funds that would help with management and treatment.
There’s a long list of differences I’ve noticed having lived abroad and living at home now. The health care system at home has failed, with patients going in for simple procedures or illnesses and coming out with complicated medical issues. Medical personnel are constantly on strike due to unpaid salaries and unfavourable working conditions. Many doctors cannot properly diagnose illnesses and refuse to admit so to patients and their families, so a patient can spend time and resources being treated for an illness they don’t even have. In Nigeria, a lot of people have no faith in the health care system, hospitals or doctors, and I am one of them. After all I was once a victim of misdiagnosis that almost claimed my mobility. Hospitals are not fully equipped with necessary medical equipment to run tests or save lives, the few that do charge an arm and leg for tests needed. Undergoing treatment in Saudi Arabia, Austria, Germany and United Kingdom has helped my healing process in so many ways. The doctors and nurses are happy to do their jobs, and are compassionate and kind while at it. Every hospital I have been to in these countries understood that mental and psychological health goes hand in hand with physical healing. There are social workers to talk to or spend time with. There are clinic clowns to play with children. And therapies such as art, music, bead making, ceramic, and other interesting crafts that can keep you busy, distracted from the pain and lift your spirits.
What motivated me to go into this field was the huge gap in development and advances. The average Nigerian dies or suffers from long term health complications because doctors got it wrong the first time, or because the patient couldn’t afford treatment. I chose Sickle Cell Anaemia as my field because Nigeria continues to top the list of countries with the highest number of babies born with SCD, and we are not doing anything to change that. Many people still don’t know their genotype or that of their partner as a result a child is born with the SS gene and pays the ultimate price and a life he never bargained for.
My work has impacted so many individuals living with Sickle Cell Anaemia. The foundation started with 3 patients who get their monthly prescription refilled, but now we have clinics able to provide patients with free or discounted medication. We have been able to pay for some patients to undergo much needed surgeries to repair damaged joints. We are also proud of the fact that through our awareness campaigns, more people are starting to be open to knowing their genotype and genetic compatibility before getting married, which is the only way to break the SCD cycle. Another important impact our work has made is through my autobiography, S is for Survivor, which has inspired many people, especially those living with the disease. Proceeds from the book sale all go to the foundation as well, in helping our Sickle Cell Warriors.
So far, a lot has been done but there is still more work to be done. The foundation would like to be able to continue visiting rural communities and talking to them on misconceptions about SCD, how it is passed, how it is supposed to be managed, and how to provide care for the patients. It is also important to continue with the Know Your Genotype campaign, which is why the foundation is planning on going round and testing people, for free.
Other people can make a difference in so many ways! The first step is to know your genotype, and after that you are responsible for making sure your family, friends, colleagues and other members of your community know theirs too. Donations to families living with SCD or hospitals and organizations caring for patients are always welcome and appreciated. A lot of these patients will tell you they feel abandoned and forgotten. They are suffering in silence as they watch a disease take over and control their lives and sometimes, there are no funds to get the most basic treatment.
My future plans and next steps are to continue doing what I have already started, and to get more individuals, agencies, the government, organizations and companies involved in the fight against Sickle Cell Anaemia. There is only so much I can do alone, but together we can so much more. My dream is to also see more people get cured and rid of this terrible disease. I understand that a Bone Marrow Transplant is expensive and risky, but I still hope that more people will have that chance. And I pray that in the near future there will be more accessible cures and less complicated too.
Feel free to reach me on Twitter here and as an organization we can be reached by any of the following options:
Phone: +234 81 75 73 44 70