Sickle-cell anaemia not a death sentence — Experts
There is a notion in Nigeria that anybody living with the sickle- cell anaemia, popularly referred to as SS, hardly lives beyond 40 years. As a matter of fact, when you come across anyone living with the condition, the next thing that comes to the mind is premature death. As a result, there is subtle discrimination against them. Medinat Kanabe reports.
A sickle-cell anaemia patient and the oldest woman living with SS in Nigeria, Alhaja Ashiata Abike Onikoyi nee Laguda, said that being sickly was a terrible thing at the time she was growing up because nobody knew about sickle-cell anemia. She was always sick to the point that in a whole year, she might attend school only about three months of the entire annual school calendar. “I would spend the other months sick and at home.”
In a bid to find cure by all means for her condition, she was given all sorts of concoction.
“I was taken to the hospital; then, they still brought all sorts of concoction from the Igbo tribe, from Yoruba people and from Hausa part of the country, because it was a very serious illness. I just took everything that they gave me. They would cut me on every part of my body, but I gave myself to them because I wanted to live.”
Abimbola Edwin and daughter, Timilehin, are lucky, unlike Alhaja, Mrs Edwin’s parents were elite, so they discovered in time – as soon as she began manifesting the symptoms at four months – and took good care of her until she could manage it on her own. Although at that time, there was nothing like the new born screening or neo-natal screening for sickle- cell anaemia, it was discovered early.
This made her follow through and survived the illness and she along with her daughterliterally battled the ailment to a standstill.
She confirmed that as a growing child, she was assailed with stories of how people with sickle-cell anaemia rarely live to be 20 and all such scary tales; but Abimbola said she prayed hard.
Timilehin Edwin, who also spoke to this reporter, said sickle-cell anaemia is not a death sentence.
The 29 year-old explained that sickle-cell anaemia has far more implications and conditions than many understand.
“For instance,” she said, “when I started, I discovered that sickle cell causes stroke. I also discovered that many people don’t know about simple things like how to treat yellow eyes. A lot of people in this country would rather opt for traditional means than follow the proper medical treatment. There is the case of a woman who recently went to wash her daughter’s yellow eyes traditionally and as we speak, the girl is on the verge of blindness.”
For Toyin Adesola, Founding Executive Director and Wellness Coach, Sickle Cell Advocacy and Management Initiative, SAMI, she has lived with sickle cell for 53 years and is still standing strong.
Just like the Edwins, you could say she was lucky because her mother was a matron when she was born and so could understand the sickness and manage it.
For her, the level of pains she underwent as a young carrier affected her body and has rendered her physically challenged but this has not deterred her from living and helping others like her.
Speaking, to The Nation, she said, “Nigeria doesn’t have a proper new born screening facility, unlike Ghana and some other countries and this really helps to detect early. The way they detect now is to wait until 18 months or 2 years or when the symptoms start coming but the thing is to detect early and start treatment. So it can be pretty challenging to just find out a child has sickle cell at that age.
On why testing isn’t mandatory at birth or at a pre-natal stage, she said, “You have to have the facilities before you can make it mandatory because the screening really helps. What is available now is the prenatal screening and it is very expensive. A lot of people cannot afford it except the middle class and the high class. A low income earner cannot afford it.
“Except the government will have it in their hospitals, but with all the issues that the government have, I don’t think they will want to do prenatal to every mother. It is supposed to be in every hospital basically because it doesn’t only test for sickle cell, but for other defects that a child can have at birth, including blindness.”
On how her foundation helps in preventing the disorder’s prevalence, she said they create awareness by telling people the importance of knowing their genotype. “A lot of people mistake genotype for blood group so we tell them that they are totally different,” she said.
She said they have had issues where people have been wrongly diagnose and they end up having a child with SS until they go and do another test to find out the truth “so we tell people to go to at least three places to carry out the test.”
“For us, we don’t force people because we believe in fundamental human rights to do what you want to do but we encourage people through counselling. We look at your capability, emotionally and financially of both the partners because we have seen situations when the mother will say she can cope, but she has forgotten that there is a part two to it, but if the father can’t cope financially or emotionally, especially what we see today is that they bounce out. It is either they physically left or they are together, but they are not there mentally and emotionally and they just basically abandon the child, so we try and inform them and we also go to schools and places that have youths to do free genotype test for them; it’s not much because of funding but we do it.
“They need to know their genotype so that they will make the right choice.”
On how far is their reach, she noted that although we are based in Lagos, they partner people in Ibadan, Port Harcourt and Kaduna to do things ,she said: “Our Kaduna branch is not fully functional because of funding, but we still do programmes there. Here in Lagos, we run a free clinic called Xtra Care Free Clinic.”
“Yes, we can prevent so that we don’t have children with sickle cell, but what do we do with those with sickle cell. You get your drugs, you see a doctor. The whole aim of this is to act as an intermediary between the hospital and the person with sickle cell because we find out that because of funds, a lot of people don’t do anything about the illness until it deteriorates and complication arises and then we spend a lot of money or we lose the person.”
Asked what their limitations are, she said apart from funds which are the general thing for most NGOs, “it is difficult to get people who will buy into your vision because it is one thing saying you have the funds ,but you also need the human resource aspect.
“For me, I have a lot of ideas but no human resource to put it into action which is challenging, especially because of funds.”
Giving statistics of the sickness in Nigeria, she said statistics are still very old, “we use 1993 statistics and I believe that it is more than that by now. Averagely, about 150 are born every year, then we have about 4 to 5 million people living with sickle cell and that’s apart from the ones that will not come out. A lot of families don’t let people know, especially in the north. I heard there are a lot of them there. Then people with sickle cell traits are about 40 million.”
Stating further that she is not in support of people that say that people with the traits should be jailed, she said at some point someone has to marry them; “I believe that the way we tried to eliminate malaria and we couldn’t but just reduce it, we can reduce it.”
Giving testimonies from her clinic, she said: “There was a young man who suffered from haemolysis which is perpetual bleeding, breaking down of the red blood cells and his eyes were very red that we were scared.
“I took him to my doctor who said it was very bad and we took him to Lagos State University Teaching Hospital, LASUTH. They told us that they didn’t know why his red blood cells were breaking down so much and we were told that his survival was 50/50, but thank God, he is well now and back to his university.
“His family is not supportive, so we are trying for him to learn a hand skill so that he can take care of himself.”
She lamented that Nigerians love to blame the government, but the government has a lot of things to do, noting that in terms of corporate organisations, a lot of people focus more on cancer, tuberculosis, malaria and forget that there is the issue of sickle cell so more organisations should get involved either here or abroad.
For Doris Gbemiloye, popularly called Mama Genotype and founder, Genotype Foundation, detection is done by the lab scientist and mistakes can be made. “Wrong results can be given because of either weak test paper, over used buffer solution which may cause ineffective separation. Some people also don’t use the control system which is supposed to be in place,” she said.
On why testing is not mandatory at birth or prenatal, she said in Nigeria, there is a law that states that it is the right of the Nigerian child to know his or her genotype.
“It is one of the rights published by the UNICEF some years ago.It states that the child has a right to life, right to freedom, right to identity, communication, privacy, leisure, education, good health. Under the good health section, it is written that the government or parents should ensure that the child educated on health issues e.g blood group, genotype, she said.”
Explaining the ways her foundation helps to prevent the disorder’s prevalence, she said it is not a law because the government is not looking at that area seriously and when government looks at it, people don’t take their time to ask questions because they are in a rush to get their results and leave.
“Another thing is that because people need a paper or admission, they forge results instead of going for a test to know their blood group and genotype. A law needs to be passed, especially on laboratories standardizations and going to school to teach about the importance of knowing genotype so that in future, it will be a thing of choice not ignorance.
“Again, if the law is passed and implemented in the cities, what happens to the rural areas; people don’t go to the deep rural areas and when it is taken to some nearby rural areas, they argue with you that it is witchcraft, abiku, ogbanje, mother in-law or sister in-law,”she said.
She further stated that the genotype foundation helps people who have sickle cell and then “we try to educate people at a young age because our major focus is prevention.
“For years, we have been going to schools to run genotype tests for them free through sponsorships and donations and the more we meet them, the more they are being armed with information concerning genotype and blood group.
“Apart from the cities, we have been to riverine areas through boats and to other very deep interlands to educate them and run the test for them.
“It’s not about just knowing the genotype, but knowing what it entails. even if you are AA, you need to be informed that you have the tendency of coming down with malaria and if you are AS or AC you are very healthy, but have the tendency to transfer the S gene to your offspring so you must be informed,”she said.
Giving testimonies of beneficiaries, she said just recently, they had a case and the doctors in LASUTH were on strike, but because of the foundation’s intervention they were able to get blood when there was no blood in the blood bank. “We donate blood to the hospital on a regular basis so whenever we need blood, we get it free.
“We have a monthly meeting where we give them drugs and they see a doctor on duty who talks to them about how to live with sickle cell. We talk to the parents to balance their psyche because there are parents who have it in mind that their children will die anytime, so we invite the older ones to talk to them.
“We have had couples who stopped their weddings after they heard about the genotype and blood group thing.
“We had another one who came with leg ulcer and today, she is fine. We got support and sponsorship from people who helped to get the drugs that healed her. She was discriminated upon by her mother who used to tell her that she smells but now the mother calls her to her side for small talks,”she said.
Saying these are reasons they say the psyche of their parents need to be balanced, she said they need to treat the child like other children. “A lot of parents are not educated about how to help their children with SS and find it difficult to accept the children,”she said.
On limitations the foundation faces, she said their greatest limitation is funds and it is a big challenge. “I wish we can be doing what we do regularly, but funds and sponsorship are not easy to come by.
“People need to be informed, so that in the next three to four years, it would have been reduced very drastically. We want in the very near future it will be a thing of choice not ignorance. The new born screening machine is on ground but not really in use, but the pre-natal diagnosis is on ground and a lot of people have been using it,” she added.