•LAGOS Doctor, ANNETTE AKINSETE
Annette Akinsete is a Consultant Public Health Physician. Currently, she is the CEO and member of Board of Directors of Sickle Cell Foundation Nigeria. She was Director (Public Health Department) of the Federal Ministry of Health for many years and has represented the Federal Government of Nigeria at several fora the world over. As a Public Health Physician, Akinsete has worked in every level of government in Nigeria – from local, state to federal levels. At the global level, she has contributed to the World Health Organisation (WHO) publications on Non- Communicable Diseases (NCDs), served as WHO Fellow in Geneva and as UN Cares Facilitator at the United Nations HQ in New York.
She was one of the health speakers at the 2022 Arise Women Conference and she spoke on what everyone should know about Sickle Cell Disorder.
She says, “Sickle Cell is a genetic disorder of the blood, I came back to Nigeria from the United Nations. I was in New York for many years, I came back but I tell you anybody can do the work.There was a gap in that Sickle Cell space. Nigeria is number one in the whole world when it comes to sickle cell and we are not doing enough about it. A sickle is an harvesting tool and why we call it sickle cell is that the red blood cells of those who have this condition looks like a sickle shape.
People worry about sickle cell so much; they worry that people who have it don’t live long, they call them Abiku, Ogbanje, caused by witchcraft or death sentence. There are so many myths around sickle cell. Things that are not correct that we should correct, so we can teach the right things.
Nigeria has the highest burden of sickle cell. 150,000 babies are born every year with SCV. 100,000 do not live to celebrate their 5th birthday. 50 million people in Nigeria have the sickle cell and are carriers of the sickle cell gene.
Symptoms and Signs of Sickle Cell Disorder. Malaria and sickle cell go hand in hand. They are super imposed on each other. It is now global, you see it in the countries where Malaria is prominent. How do you know when someone has Sickle Cell? The first thing you will notice in babies is painful swelling of hands and feet; Hand Foot Syndrome between age 7 and 8 months. If any home has a sickle cell child, that home is in a state of turmoil. The reason is that, those first few months that the symptoms will not show is because the babies still have the red blood cells from their mother’s womb until the child’s genetic predisposition begins to show up around 7-9 months. The hallmark with this condition is pain. Bone pain, when you ask them, on a scale of 1 to 10, they will say it’s beyond the scale. For those who have had babies, they will tell you it is worse than labour pain.
Another hallmark is pallor, it is called paleness, shortage of blood, that is why they are very weak. Sometimes, you see them with severe jaundice, that is yellowness of the white part of the eye and that is because the red blood cells are breaking down rapidly that the body cannot clear it from the system and it ends up in the yellowness that you see. Sometimes, you see bossing of the head and that is because the skull is part of the bone of the body where blood cells are produced, so the blood is telling itself , I need more blood. You can see them with swollen abdomen, Acute Chest Syndrome, that dark part is where there is air in the lungs, not the white part. Children with Sickle Cell can die within an hour from this complication called Acute Chest Syndrome. That is why we say to mothers, any child that has sickle cell and has a fever, don’t treat the child at home, take them to the hospital. People find it hard to believe that children who have sickle cell can have stroke! A 2-year-old can have stroke, 5, 16 years and all. By way of management, all children who have sickle cell between the ages of 2 and 16 must undergo what we call TCD Scan, Transcranial Doppler Scan and this is to help us prevent stroke from occurring. Prevention is cheaper and better than cure. In our centre , what we do is the TCD Scan, very evasive and it helps us select children who have high risk of developing stroke and we give them special treatment so that they don’t get stroke. Another chronic complication is leg ulcer; this is one of the most stigmatizing complications. I know a patient who nearly took her life at the age of 19, a University of Lagos student, her mother brought her to us, thank God she is very fine today, she is a lawyer. She almost killed herself because where she was living at the time, they used to call her with the leg ulcer appellation. ‘The one with the sore in the leg’ and she will respond, so, it is very stigmatizing to a point that people commit suicide. Another complication that they have is Avascular Necrosis; degeneration of the hip joint which keeps them on wheel chairs. It is what we call (immobilized) Avascular Necrosis because blood is not flowing to the head of the femur, there is pain when they are walking and when they can no longer walk, they tend to use wheelchairs and the only treatment is surgery. There is another very bad complication of sickle cell, called priapism, it is called painful erection, it is common in men. Painful erection in penis that does not go down. This may lead to impotency when he grows older. It is something you have to handle well. If you don’t know it, you can not treat it.
There is a lot of mental health challenges for the families, care givers, for the person that has the disorder. Depression, isolation, anxiety and all set in. They confront their parents, there are battles in the home. Talk to somebody, that is what we are sensitizing about. Don’t keep it to yourself. For those of us that are looking after sickle cell patients, we know that it is multi-disciplinary, it is not what one doctor can handle or look after, or counsellor or a nurse can look into, you need to have a combination of all of them. A paediatrician, gynaecologist, clinical psychologist, and all.
Our National Sickle Cell Centre is in Surulere, you can come for a visit anytime. What can be done? A lot can be done. It can be prevented, it is a genetic condition that you get from your father and mother, but it can be prevented. It can be treated and now, it can be cured. For the first time in Lagos, at our centre, we have a Stem Cell Transplantation Centre together with LUTH, (Lagos University Teaching Hospital). We are collaborating with LUTH and set up a cure transplant centre for sickle cell for our people in Nigeria. We now offer quality stem cell transplantation in our country for our people so they don’t need to travel abroad. We also do Genetic counselling every day in our centre and it is important to know whether you can have a child with someone, so, it is your choice, they also counsel those that do not know how to take care of the condition. Genotype testing is what you should do when dating, that is how you can know, it is not written on anyone’s forehead whether they are AS or SS, early diagnosis helps you treat early, prenatal diagnosis helps you a lot, it can happen in the uterum. To know the genotype of your unborn child in the first trimester, it is not to support or encourage abortion, that is not our policy, no, we don’t do that, immediately the child is born, we take the child into our care and start giving the baby preventative treatments, vaccinations, antibiotics that prevent all those infections that tends to kill them, so they don’t end up having Hand and Foot Syndrome and they do well to the age of 5 and more. We have what we call Pre-implantation genetic diagnosis and it takes place in Nigeria at 2 centres and that is where we do Invitro Fertilisation, (IVF), outside the body, then they select the cells to use so much that the mother will carry the baby and will eventually not have the condition. It is very expensive. DNA testing as well. We need to have what we call dedicated sickle cell clinics,we have started doing that but we implore everybody to support us. We want clinics that are run specially for sickle cell patients. We also give patients life-saving medicines and vaccines. Antibiotics, Hydroxyurea, Folic Acid which prevent them from dying. We have a special solution for treating leg ulcers and we got it from Ghana. When given to patients, the leg ulcers will not come back after its treatment. We also do TCD Scan to prevent strokes, for the hip replacement surgery, we do it in collaboration with Igbobi Orthopedic Hospital. There is also an innovation, art in medicine, art therapy for sickle cell, we found out that when patients while away time painting, drawing or playing instruments, they tend to forget their pain, so it helps them to deal with pain and reduce the amount of toxic medications that they take. This is available at our centre in Surulere. And we also take it out, we take this education to schools, before they start toasting each other, let them know what sickle cell is. We also go into the communities. The cure is called Stem Cell Transplantation which is also the same as Bone Marrow Transplantation, which is like a blood transfusion. The many Dos are, see your doctors regularly, go to the hospital when you are ill, take Folic Acid, eat a balanced diet, know yourself, take care of your mental and emotional health, join support groups, the many Don’ts are, avoid extreme cold, extreme heat, do not isolate yourself, not more than 2 pregnancies, avoid excessive physical exercise.”
-TAYO OYEDIJI
(08111811219)
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