Samira Haruna Sanusi, founder of Samira Sanusi Sickle Cell Foundation, nearly lost her life to sickle cell anemia and having narrowly survived it, she has set up a nonprofit creating awareness on the disease across Nigeria as well as helping less fortunate patients get medical aid. She tells African Newspage the emotional story of her successful battle with the disease, and sadly, how only days ago she lost a good friend, Nura Abdullahi, to it; one who was also largely instrumental in her setting up an NGO to campaign against the scourge
How the Samira Sanusi Sickle Cell Foundation did come about?
Samira Sanusi Sickle Cell Foundation was established to spread awareness about sickle cell anemia in Nigeria as well as provide assistance to low income families living with the disease. I got the inspiration to start the foundation from my own life; I was born with sickle cell anemia and it nearly cost me my life, I was sick and wheelchair-bound for 7 years. I was in the hospital in different countries; I later had to learn how to walk all over again. I went through a lot because of sickle cell anemia.
When I came back home to Nigeria, I realized that even though I had gone through a lot, I was still very lucky because so many people living with the condition here in Nigeria could not afford basic medication, which has to be taken every day; they can’t afford healthcare when they have sickle cell complications like pneumonia, arthritis or any other organ failures. I was lucky because I had a father who was willing to do whatever it took to take me to any specialists around the world and in the process I was able to get bone marrow transplant, which is the only known cure for sickle cell anemia at the moment.
So, when I moved back to Nigeria after I was cured and I was now an AA, I realized so many people were less fortunate and could not get that; they can’t even afford basic day to day medication not to even talk of getting a transplant. So, we started the foundation to assist sickle cell patients especially people who live in the rural communities and who don’t have access to good healthcare. At the same time, our objective is to spread awareness about the disease, to educate people on what sickle cell anemia is including how it is inherited. It is a disease that can be avoided, if before getting married would-be couples go for genotype tests.
If an AS or SS is married to someone who is also carrying the genes, it means that there are chances of them giving birth to a child who is carrying sickle cell anemia and the worst part of the disease is that although the parents also suffer, the child suffers the most in such cases. You bring a child into this world and they suffer all their life; they are in constant pain, they are in constant crises, a lot of kids don’t even make it to their fifth birthday. They need blood and they have other special needs, there is stigma because the sickle cell patients who manage to reach adulthood don’t get employed, they are termed as Obanje or Mai ciwon iska, (those affected by evil spirits) since they are constantly falling sick.
That is a very unfair thing to do to your child, if this happened in the past and our parents did so because they were ignorant now in the 21st century we don’t have any excuse for going into marriage without finding out whether or not the families of the would be husband and wife have a history of genetic complications. I mean if you can, for example, go to the extent of trying to find out about where the person marrying your daughter is working, where he is from and what family he is from, why don’t you try and know his genotype. So, we are trying to get people to understand that to break the sickle cell cycle in Nigeria we need to know our genotype and genetic compatibility before marriage.
This is to guard against more children being born with the disease, at the same time we need to come together and provide support to people who are living with the disease, who don’t know whether or not they will survive it. Just 2 days ago I lost a very good friend of mine, Nura Abdullahi, who was also born with sickle cell anemia. I met Nura in 2010 when I came back to Nigeria and when I shared my story with him he looked at me and said “Samira you are cured, not many sickle cell patients in Nigeria get cured, some of us know about it but can’t afford it.”
Nura said to me may be you should be an advocate for sickle cell awareness by educating and enlightening people about the disease. He told me everything I needed to know about sickle cell advocacy and awareness, we went round to do interviews together where we talk to people, asked about their concerns and provided support and managed patients. He taught me everything I needed to know about running a sickle cell foundation. Unfortunately, Nura passed away just 2 days ago; he was 28 years old and did so much for sickle cell awareness in Nigeria.
Everywhere you went to you will hear him talking know your genotype, be smart, love is not everything, love is important if you are getting married but not when your child is constantly sick and you are always in the hospital. If your child is sick you don’t even have time to be in love or worship or have a happy family because you are constantly worried and spending money.
Part of me is happy because his pain has ended; he was in so much pain, in and out of hospital. Sometimes he would be on admission for 8 weeks and then he will be okay and will try to live a normal life, go back to school and the sickness will be back and he would have to go back to hospital, again. It was a long life of pain, crisis and complications yet he never stopped telling people, educating and enlightening them. I think the best thing I can do to honor his memory is to continue with the message of awareness, enlightenment and support for patients of sickle cell anemia.
Having worked with victims of sickle cell anemia for some time in the areas of providing medical assistance as well as advocacy and creating awareness, how can you describe the situation of victims of the disease in Nigeria?
In Nigeria, it is extremely difficult for sickle cell patients to live and survive because, first of all, malaria is a big threat to sickle cell patients here. Something like malaria can always trigger crisis for the patients. The thing about sickle cell is that anything can trigger it, some sickle cell patients will fall sick because they are upset, stressed up or are just in a bad mood. So, anything can trigger a crisis. Now, living in Nigeria where we have issues having safe drinking water, sanitation and hygiene, it is already difficult for a normal person to survive not to talk of patients of sickle cell anemia.
Again, we don’t have proper centers for the treatment and management of patients of sickle cell. In other countries like UK, sickle cell patients lead a normal and healthy life because they have regular checkups, they are constantly being checked up for various sickle cell complications. Here we don’t have such facilities and sickle cell patients may have to wait until they feel pains in their joints before they can see a doctor and may be at first they will be treated with pain killers before the doctors will eventually decide to ask them take an X-ray. By then they may realize the patients might have started to develop arthritis or other bone infections.
So, there is lot that needs to be done in providing care to sickle cell patients, it is not just about given them paracetamol, or folic acid, it goes beyond that. You see patients of sickle cell anemia here dying really young over something that could have been prevented and it was the reason why I also almost lost my life in Nigeria until I was taken out of the country. I had a severe crisis, my usual crisis lasts for one week but this one was for over 2 months and the doctors kept telling my parents that it was a normal crisis and nothing else was wrong with me.
They were lying! By the time I left Nigeria every organ in my body was shutting down, I was literally dying and even when I left Nigeria doctors told my parents that my legs had to be amputated, there was nothing they could do to me. My parents just had to take me back home and wait for me to die. So, you can imagine a situation like this whereby you are really sick and you don’t have the right hospital and specialist doctors to examine and treat you.
We are therefore trying to advocate that people living with sickle cell anemia eat well, and they are provided with the best of care. We have lost a lot of patients because they needed blood and there was none in the blood banks of the hospitals. Such things could be avoided if only we have treatment centers around the country.
Your foundation is hosting series of events across Nigeria to commemorate this year’s World Sickle Cell Day; what kinds of activities are you organizing?
Basically, what we are doing for 2016 World Sickle Cell Day is organizing community outreaches in Kaduna, Ibadan, Lagos and Funtua in Katsina state. For example, in Lagos what we are doing is going to rural communities to sit down with the residents and their leaders and pose certain questions at them; questions like do you know what sickle cell anemia is? Do you know your genotype? Do you know someone who is a carrier of the disease? Do you know that this disease can be prevented? Is there anyone in your community who is a sickle cell patient, if yes are they given any medication?
When you go to communities here in Nigeria they will tell you that sickle cell patients have been infected by evil spirits for which reason they are not given any proper medication. So, there are still a lot of misconceptions about the disease for which patients don’t get the proper treatment. When we go to such communities we try and identify the community leaders that are known and respected in such communities and encourage them to use their positions to create awareness on sickle cell and most importantly, how it can be prevented.
The community outreaches are important because they give us access to people who don’t have any information about the disease, I mean people who cannot go on Google and check what sickle cell anemia or genotype is. It also afford us the opportunity to identify patients who really need help but don’t have access to healthcare probably because they can’t afford it.
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