Sickle-cell anaemia not a death sentence — Experts
by Medinat Kanabe February 23, 2019
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.
About The Author
Regardless if you believe in God or not, this message is a “must-read”!
Throughout time, we can see how we have been carefully conditioned to come to this point where we are on the verge of a cashless society. Did you know that the Bible foretold of this event almost 2,000 years ago?
In the last book of the Bible, Revelation 13:16-18, we read,
“He (the false prophet who deceives many by his miracles–Revelation 19:20) causes all, both small and great, rich and poor, free and slave, to receive a mark on their right hand or on their foreheads, and that no one may buy or sell except one who has the mark or the name of the beast, or the number of his name.
Here is wisdom. Let him who has understanding calculate the number of the beast, for it is the number of a man: His number is 666.”
Speaking to the last generation, this could only be speaking of a cashless society. Why so? Revelation 13:17 says that we cannot buy or sell unless we receive the mark of the beast. If physical money was still in use, we could buy or sell with one another without receiving the mark. This would contradict scripture that states we need the mark to buy or sell!
These verses could not be referring to something purely spiritual as scripture references two physical locations (our right hand or forehead) stating the mark will be on one “OR” the other. If this mark was purely spiritual, it would indicate both places, or one–not one OR the other!
This is where it really starts to come together. It is incredible how accurate the Bible is concerning the implantable RFID microchip. Here is information from someone named Carl Sanders who worked with a team of engineers to help develop this RFID chip:
“Carl Sanders sat in seventeen New World Order meetings with heads-of-state officials such as Henry Kissinger and Bob Gates of the C.I.A. to discuss plans on how to bring about this one-world system. The government commissioned Carl Sanders to design a microchip for identifying and controlling the peoples of the world—a microchip that could be inserted under the skin with a hypodermic needle (a quick, convenient method that would be gradually accepted by society).
Carl Sanders, with a team of engineers behind him, with U.S. grant monies supplied by tax dollars, took on this project and designed a microchip that is powered by a lithium battery, rechargeable through the temperature changes in our skin. Without the knowledge of the Bible (Brother Sanders was not a Christian at the time), these engineers spent one-and-a-half-million dollars doing research on the best and most convenient place to have the microchip inserted.
Guess what? These researchers found that the forehead and the back of the hand (the two places the Bible says the mark will go) are not just the most convenient places, but are also the only viable places for rapid, consistent temperature changes in the skin to recharge the lithium battery. The microchip is approximately seven millimeters in length, .75 millimeters in diameter, about the size of a grain of rice. It is capable of storing pages upon pages of information about you. All your general history, work history, criminal record, health history, and financial data can be stored on this chip.
Brother Sanders believes that this microchip, which he regretfully helped design, is the “mark” spoken about in Revelation 13:16–18. The original Greek word for “mark” is “charagma,” which means a “scratch or etching.” It is also interesting to note that the number 666 is actually a word in the original Greek. The word is “chi xi stigma,” with the last part, “stigma,” also meaning “to stick or prick.” Carl believes this is referring to a hypodermic needle when they poke into the skin to inject the microchip.”
Mr. Sanders asked a doctor what would happen if the lithium contained within the RFID microchip leaked into the body. The doctor replied by saying a terrible sore would appear in that location. This is what the book of Revelation says:
“And the first (angel) went, and poured out his vial on the earth; and there fell a noisome and grievous sore on the men which had the mark of the beast, and on them which worshipped his image” (Revelation 16:2).
You can read more about it here–and to also understand the mystery behind the number 666: https://2RUTH.ORG
The third angel’s warning in Revelation 14:9-11 states,
“Then a third angel followed them, saying with a loud voice, ‘If anyone worships the beast and his image, and receives his mark on his forehead or on his hand, he himself shall also drink of the wine of the wrath of God, which is poured out full strength into the cup of His indignation. He shall be tormented with fire and brimstone in the presence of the holy angels and in the presence of the Lamb. And the smoke of their torment ascends forever and ever; and they have no rest day or night, who worship the beast and his image, and whoever receives the mark of his name.'”
Great hope is in our midst, and is coming in a mighty way–the greatest revival for Jesus in the history of the world where we will see the most souls come to Him of all tribes, tongues, nations, and peoples (Rev. 7:9-10); for we have this promise in God’s Word in the midst of these dark times:
“Then I saw an angel coming down from heaven, having the key to the bottomless pit and a great chain in his hand. He laid hold of the dragon, that serpent of old, who is the Devil and Satan, and bound him for a thousand years (not literal–rather a spiritual label for time spent in eternity); and he cast him into the bottomless pit, and shut him up, and set a seal on him, so that he should deceive the nations no more till the thousand years were finished. But after these things he must be released for a little while (when the Antichrist and false prophet will rise up and God will test the world).” (Revelation 20:1-3)
“The coming of the lawless one (the Antichrist) is according to the working of Satan, with all power, signs, and lying wonders, and with all unrighteous deception among those who perish, because they did not receive the love of the truth, that they might be saved. And for this reason God will send them strong delusion, that they should believe the lie, that they all may be condemned who did not believe the truth but had pleasure in unrighteousness.” (2 Thessalonians 2:9-12)”
Who is Barack Obama, and why is he still around?
So what about his name? The meaning of someone’s name can say a lot about a person. God throughout history has given names to people that have a specific meaning tied to their lives. How about the name Barack Obama? Let us take a look at what may be hiding beneath the surface.
Jesus says in Luke 10:18, “…I saw Satan fall like lightning from heaven.”
The Hebrew Strongs word (H1299) for “lightning”: “bârâq” (baw-rawk)
In Isaiah chapter 14, verse 14, we read about Lucifer (Satan) saying in his heart:
“I will ascend above the heights of the clouds, I will be like the Most High.”
In the verses in Isaiah that refer directly to Lucifer, several times it mentions him falling from the heights or the heavens. The Hebrew word for the heights or heavens used here is Hebrew Strongs 1116: “bamah”–Pronounced (bam-maw’)
In Hebrew, the letter “Waw” or “Vav” is often transliterated as a “U” or “O,” and it is primarily used as a conjunction to join concepts together. So to join in Hebrew poetry the concept of lightning (Baraq) and a high place like heaven or the heights of heaven (Bam-Maw), the letter “U” or “O” would be used. So, Baraq “O” Bam-Maw or Baraq “U” Bam-Maw in Hebrew poetry similar to the style written in Isaiah, would translate literally to “Lightning from the heights.” The word “Satan” in Hebrew is a direct translation, therefore “Satan.”
When Jesus said to His disciples in Luke 10:18 that He saw Satan fall like lightning from heaven, if this were to be stated by a Jewish Rabbi today influenced by the poetry in the book of Isaiah, he would say these words in Hebrew–the words of Jesus in Luke 10:18 as, and I saw Satan as Baraq O Bam-Maw.
Malie and Natasha are the names of Obama’s daughters. If we write those names backward (the devil does things in reverse) it would be “ailam ahsatan”. If we remove the letters that spell “Alah” (Allah being the false god of Islam), we would get “I am Satan”. Mere coincidence? I do not believe so!
Obama’s campaign logo when he ran in 2008 was a sun over the horizon in the west, with the landscape as the flag of the United States. In the Isalmic religion, they have their own messiah that they are awaiting called the 12th Imam, or the Mahdi (the Antichrist of the Bible), and one prophecy concerning this man’s appearance is the sun rising in the west.
“Then I saw another angel flying in the midst of heaven, having the everlasting gospel to preach to those who dwell on the earth—to every nation, tribe, tongue, and people— saying with a loud voice, ‘Fear God and give glory to Him, for the hour of His judgment has come; and worship Him who made heaven and earth, the sea and springs of water.'” (Revelation 14:6-7)
Why have the words of Jesus in His Gospel accounts regarding His death, burial, and resurrection, been translated into over 3,000 languages, and nothing comes close (the Quran about 110 languages)? Because the same Spirit of God (YHVH) who created all people likewise transcends all people; therefore the power of His Word is not limited by people; while all other religions are man-made, therefore they tend to primarily stay within their own culture. The same God who speaks to all people through His creation of the heavens and earth that draws all people around the world likewise has sent His Word to the ends of the earth so that we may come to personally know Him to be saved in spirit and in truth through His Son Jesus Christ.
Jesus stands alone among the other religions that say to rightly weigh the scales of good and evil and to make sure you have done more good than bad in this life. Is this how we conduct ourselves justly in a court of law? Bearing the image of God, is this how we project this image into reality?
Our good works cannot save us. If we step before a judge, being guilty of a crime, the judge will not judge us by the good we have done, but rather by the crimes we have committed. If we as fallen humanity, created in God’s image, pose this type of justice, how much more a perfect, righteous, and Holy God?
God has brought down His moral laws through the 10 commandments given to Moses at Mt. Siani. These laws were not given so we may be justified, but rather that we may see the need for a savior. They are the mirror of God’s character of what He has written in our hearts, with our conscious bearing witness that we know that it is wrong to steal, lie, dishonor our parents, murder, and so forth.
We can try and follow the moral laws of the 10 commandments, but we will never catch up to them to be justified before a Holy God. That same word of the law given to Moses became flesh about 2,000 years ago in the body of Jesus Christ. He came to be our justification by fulfilling the law, living a sinless perfect life that only God could fulfill.
The gap between us and the law can never be reconciled by our own merit, but the arm of Jesus is stretched out by the grace and mercy of God. And if we are to grab on, through faith in Him, He will pull us up being the one to justify us. As in the court of law, if someone steps in and pays our fine, even though we are guilty, the judge can do what is legal and just and let us go free. That is what Jesus did almost 2,000 years ago on the cross. It was a legal transaction being fulfilled in the spiritual realm by the shedding of His blood with His last word’s on the cross crying out, “It is finished!” (John 19:30).
For God takes no pleasure in the death of the wicked (Ezekiel 18:23). This is why in Isaiah chapter 53, where it speaks of the coming Messiah and His soul being a sacrifice for our sins, why it says it pleased God to crush His only begotten Son.
This is because the wrath that we deserve was justified by being poured out upon His Son. If that wrath was poured out on us, we would all perish to hell forever. God created a way of escape by pouring it out on His Son whose soul could not be left in Hades but was raised and seated at the right hand of God in power.
So now when we put on the Lord Jesus Christ (Romans 13:14), where God no longer sees the person who deserves His wrath, but rather the glorious image of His perfect Son dwelling in us, justifying us as if we received the wrath we deserve, making a way of escape from the curse of death; now being conformed into the image of the heavenly man walking in a new nature, and no longer in the image of the fallen man Adam.
Now what we must do is repent and put our trust and faith in the savior, confessing and forsaking our sins, and to receive His Holy Spirit that we may be born again (for Jesus says we must be born again to see and enter the Kingdom of God in John chapter 3). This is not just head knowledge of believing in Jesus, but rather receiving His words, taking them to heart, so that we may truly be transformed into the image of God. Where we no longer live to practice sin, but rather turn from our sins and practice righteousness through faith in Him in obedience to His Word by reading the Bible.
Our works cannot save us, but they can condemn us; it is not that we earn our way into everlasting life, but that we obey our Lord Jesus Christ:
Jesus says,
“Not everyone who says to Me, ‘Lord, Lord,’ shall enter the kingdom of heaven, but he who does the will of My Father in heaven. Many will say to Me in that day, ‘Lord, Lord, have we not prophesied in Your name, cast out demons in Your name, and done many wonders in Your name?’ And then I will declare to them, ‘I never knew you; depart from Me, you who practice lawlessness!’ (Matthew 7:21-23)
“And having been perfected, He became the author of eternal salvation to all who obey Him.” (Hebrews 5:9)
“Now I saw a new heaven and a new earth, for the first heaven and the first earth had passed away. Also there was no more sea. Then I, John, saw the holy city, New Jerusalem, coming down out of heaven from God, prepared as a bride adorned for her husband. And I heard a loud voice from heaven saying, ‘Behold, the tabernacle of God is with men, and He will dwell with them, and they shall be His people. God Himself will be with them and be their God. And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away.’
Then He who sat on the throne said, ‘Behold, I make all things new.’ And He said to me, ‘Write, for these words are true and faithful.’
And He said to me, ‘It is done! I am the Alpha and the Omega, the Beginning and the End. I will give of the fountain of the water of life freely to him who thirsts. He who overcomes shall inherit all things, and I will be his God and he shall be My son. But the cowardly, unbelieving, abominable, murderers, sexually immoral, sorcerers, idolaters, and all liars shall have their part in the lake which burns with fire and brimstone, which is the second death.'” (Revelation 21:1-8)