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Nairaland Forum / Nairaland / General / Family / Parents With Sickle Cell Kids How Do You Cope? (20717 Views)
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Re: Parents With Sickle Cell Kids How Do You Cope? by 1Sharon(f): 5:21pm On Dec 01, 2023 |
fastseo: You don't get it do you? Once they had the first child with ss, what precautions did they take? Why did they continue to have more and more children with ss?? The 80s are irrelevant here. Ops siblings are not 80s babies, they are 2000 babies. His parents really had no excuse. It like they didn't care. |
Re: Parents With Sickle Cell Kids How Do You Cope? by Kobojunkie: 5:25pm On Dec 01, 2023 |
1Sharon:By the 1980s, people or at least those who had SS children in there homes were aware that contrary to former ignorance, Ibikus and ogbanjes were mostly Sicklecell patients. I was in primary school in those days and had some of them as class mates so I knew this. Most of these course mates died by the 1990s, so for anyone to claim parents were all ignorant in the 80s is bullsheet! ![]() Na wickedness abeg! ![]() 1 Like |
Re: Parents With Sickle Cell Kids How Do You Cope? by 1Sharon(f): 5:26pm On Dec 01, 2023 |
Kobojunkie: Yeah you're right. One child with.ss is a mistake. Anymore, that's on you. |
Re: Parents With Sickle Cell Kids How Do You Cope? by Melagros(m): 9:59pm On Dec 01, 2023 |
Kobojunkie:If you don't know a lot of people in this country are still not aware of the menace of siclecell if you think I'm lying travel to the northern part of Nigeria |
Re: Parents With Sickle Cell Kids How Do You Cope? by Kobojunkie: 10:10pm On Dec 01, 2023 |
Melagros:You do know that Ignorance, especially the kind born of arrogance, is not the same thing as lack of awareness, right? ![]() Those who refuse to listen to doctors time and time again even after dealing with a first, second, Sicklecell child, are not ignorant but wicked. ![]() |
Re: Parents With Sickle Cell Kids How Do You Cope? by fastseo: 10:13pm On Dec 01, 2023 |
1Sharon:Did he tell you they are 2000? Didn't you see where he said the parents are now old. I don't know why you argue a lot. Calling the parents wicked, that was why I quoted you. The parents are ignorant, they knew nothing about it the disease, if they knew they would have taken measures |
Re: Parents With Sickle Cell Kids How Do You Cope? by Kobojunkie: 10:17pm On Dec 01, 2023 |
fastseo:Ignorance is maybe the first or second but after that, it is blatant wickedness. ![]() By the 1980s, the primary school health science curriculum included teaching kids about such sicknesses as sickle cell anemia, sleeping sickness(trypanosomiasis), and a handful of other conditions. There was mass education going on particularly for parents who already has kids with the disorder on cause and prevention. So, to suggest that the 80s was a decade of ignorance as far as Sicklecell anemia is a total lie. ![]() 2 Likes |
Re: Parents With Sickle Cell Kids How Do You Cope? by 1Sharon(f): 10:22pm On Dec 01, 2023 |
fastseo: Didnt you read the OP? Can't you make your own deductions? His siblings are in uni. Can't you deduce that they much younger than 80s offspring? Once the parents had the first child with SS, what actions did they take? What did they learn from that child? Why did they make same mistake again and again? Old age has nothing to do with it. They were not old when those children were born. Acidosi.s was right OP's parents are indeed wicked. 1 Like |
Re: Parents With Sickle Cell Kids How Do You Cope? by fastseo: 12:18am On Dec 02, 2023 |
Kobojunkie: When I wanted to get married, I was speaking with a man In his 60s a pastor .. One thing he mentioned was that during his time they knew nothing about AS/As genotype. Do you think education has reached every aspect of Nigeria? When I was serving, I had the privilege to be posted to the north an interior village before I redeployed south. You will be amazed that most people don't or have little information about aids, HIV prevention and control. Etc this is a community without electricity. We should not sit on one side and conclude. There are certain factors at play... Which one of them is ignorance. They didn't know much and maybe thought it's just early child sickness. Nigerians are not well educated as you think, iterate level is extremely low in rural areas. Poverty is shocking high. Most families don't have funds for ordinary malaria drugs etc they relied heavily on roots and herbs and only wait till things get worse before they get to hospital. In a yard I was living when I was in Nigeria. There was a baby born then. I even thought the baby was a stickler because every night the mom must administered several drugs in the baby.. Drugs will full one bucked where the mom select an administered. Baby was soo thin and look out of this world. But with time around 5 years she became okay and now she look like giant to me and now married and give birth. |
Re: Parents With Sickle Cell Kids How Do You Cope? by fastseo: 12:31am On Dec 02, 2023 |
1Sharon: You are well informed, living in the city with big phones, have access to CNN, went to school up to secondary school and we'll exposed... There are areas in Nigeria where they have no access to electricity, no access to primary health center, no access to water. I had the privilege of serving in the core north when I was in Nigeria and I will tell you that the poverty in Nigeria is shockingly high mostly in our rural areas. What guide them there is local culture and traditions norms and values which has little to offer in terms of science and technology. Where before they get married they consult an imam or a local traditional seers who tells them it's the will of the gods etc. Even my mom told me about when she wants to get married, the parent consulted a seer who told them my dad will die young.. True to their words he died after 10 years or more in the marriage When sickness arises they run to the traditional healer who gives them herbs and stuff like that and they continue. Even in the city, people just start relationship and start producing children.. Majority of Nigeria ends up like this. For now we can't know it all, until we hear the parents side of view, that's why I said it's ignoran and left it so. Even science don't know it all that's why in research analysis, we don't reject rather we fail to accept. Because we don't know whether a what we are rejecting will be right after when much studies are applied. |
Re: Parents With Sickle Cell Kids How Do You Cope? by Kobojunkie: 12:34am On Dec 02, 2023 |
fastseo:1. Had the man in question ever been directly impacted by Sickle-cell Anaemia or had a close relative with the disorder that he had to care for? ![]() 2. Had any of these villagers had to visit a local hospital for treatment for any of the listed conditions before or during that point in time? I ask because there is no way a HIV case would appear in a hospital and not at least walk away more knowledgable than when he first walked into the hospital. ![]() 3. This discussion isn't about random people who have never been directly impacted by the condition in question but of people like OP's parents who had not one but 2 SS children before proceeding to have a third one. They had to have been aware there was a problem that needed handling, and must have been informed while seeking help from medical professionals for their previous 2 cases before they had the 3rd SS child. What's worse is that all 3 SS children were probably born in the new millennia — 2000s. ![]() 4. Poverty is not a good enough excuse for ignorance, nor is it a copout for what is apparent wickedness on the part of OP's parents. 5. While you may have been ignorant of the child's true condition, I can bet you that the mother who administered the drugs to said child is well aware of the condition her child suffered and can even give you pointers on what drug to use, all based on information she received primarily from her doctors. ![]() |
Re: Parents With Sickle Cell Kids How Do You Cope? by fastseo: 12:49am On Dec 02, 2023 |
Kobojunkie: You are in the city and have access to doctors, private clinic, labs. About 90% of Nigeria are in extreme poverty far exceeding that of India with a billion plus population. There are villages with no access to a single doctors. Even in big cities in Nigeria today doctors are drying up as they all come here to practice. The last time I visited fmc they booked me 1 month time space to see a consultant, worst still I find it hard to get a consultant in private clinic except in Lagos where I saw specialist hospital that deals with issue like that. People are dying of aids, HIV related illness with no data to capture such occurrance and the victim/patient don't only realise it when they are at dying point. Nigeria is really messed. I was part of a team conducting a research last week with one of the Universities here in UK and my focus was on Nigeria. Had to go to the Nigerian export promotion Council to get data but no enough data everywhere was dry... Most I saw only ended up in 2008. But when I went to FRED database you see lots of data covering decades ago While am saying this is that Nigeria is messed and poverty is high. People easily sell their votes for few cups of garri and some accept 30k to defend politicians online. All this are ignorance and poverty at play With science today, the issue of sickle cell can be handled effectively with preconception sex selection, primary sex selection or sex pre-selection which means that AS/AS can still Marry and produce children free from genetics disease but the question remains can the average Nigeria afford this expensive procedure that are easily affordable in western countries? Are there hospitals in Nigeria that can handle the process without shipping the specimen abroad which end up compounding the financial cost |
Re: Parents With Sickle Cell Kids How Do You Cope? by Kobojunkie: 1:49am On Dec 02, 2023 |
fastseo:Please stop already and visit reality! ![]() Read the following article and you will find that what you continue to describe is nowhere near the problem. Many are aware of the problem but choose to go on having kids anyway. That is more the case than not. Sickle Cell Nigeria Here's a similar conclusion from a report that was compiled in 2016 on research done on college students in at least one of the northern states. This high rate of awareness is attributed to the fact that majority of the students in higher institutions have better access to mass media, health facilities and friends which have been reported as the major means of disseminating the information about sickle cell anemia [10]. Despite the good awareness and knowledge about sickle cell disease, it was observed that a reasonable number among the respondent (42%) believed that the disease can be transmitted via blood transfusion. This misconception is misleading and can result in people refusing blood transfusion when critically ill which might have a devastating effect on their health outcome. This study observed that on the whole, people who attend tertiary institutions knew that avoidance of marriage between two people with incompatible hemoglobin genotype is the major means of preventing the disease and a similar finding was also reported by other studies [4, 8]. This knowledge will assist in preventing the incidence of the disease in Nigeria which ranks first among the endemic countries with sickle cell disease in the world [8]. There was a significant difference between the knowledge of sickle cell disease and the actual practice of pre-marital genotype screening from the study. Despite the good knowledge, high level of awareness and positive attitude towards sickle cell disease and screening for genotype, it was also observed from previous studies that majority of people did not know their genotype [8, 11. 14]. This is quite disturbing because the findings relating to poor practice of genotype screening is among youths in tertiary institutions with good knowledge. As such the situation is worse among individuals with poor knowledge as revealed in previous studies [11, 14]. This is a challenge to the nation that is currently recording new cases of the disease despite resources channel towards awareness.Ignorance ceased to be the issue beginning as far back as the 80s. It is the human arrogance that is the problem. ![]() 1 Like |
Re: Parents With Sickle Cell Kids How Do You Cope? by fastseo: 5:00am On Dec 02, 2023 |
Kobojunkie: What did you understand from that you posted? I didn't border going through the link you provided? because it was subscription. Asking me to pay 5 pounds before I access the article. But I pick a line from your quote majority of people did not know their genotype From your quote. This shows or point to what I was saying... People just go on having kids without knowing their genotype. Which comes to ignorance and poverty. More also the respondant are from a bayero university Kano, which made the mean age to be 25 years (23 to 27). It will be bias to use this as a basis to judge the entire population because they did not cover much data from where the problem seems to be coming from 40 to 70. You should expect high awareness in bayero university Kano environment or in the city.. To truly understand what I am saying. Go into the villages and see for your self. You will find out that they cared less why because they don't seems to understand much about the illness. The mean age of the respondents is 25 years (range 23-27). Majority (92%) of the respondents have a good knowledge on sickle cell disease with a score ≥ 60. However, the practice of premarital genotype screening among respondents was significantly lacking (P < 0.05), which was irrespective of their marital status. The study concludes that despite the good knowledge of SCD among participants, it did not affect the practice of premarital screening. It is thus recommended that religious and community leaders should be sensitized on the importance of educating their members and to include premarital genotype screening result as a criterion before marriage. You will hardly find this problem in the western world among black population. The same thing is happening in aids/HIV where it is prevailance in sub-saharan Africa where 67% of 38.4 million are living with the disease with over 2.2 million death recorded in 2021 alone in sub-saharan Africa |
Re: Parents With Sickle Cell Kids How Do You Cope? by Kobojunkie: 5:30am On Dec 02, 2023 |
fastseo:Now I am certain you are just trying to argue for the sake of argument. ![]() This high rate of awareness is attributed to the fact that majority of the students in higher institutions have better access to mass media, health facilities and friends which have been reported as the major means of disseminating the information about sickle cell anemia [10]. Despite the good awareness and knowledge about sickle cell disease, it was observed that a reasonable number among the respondent (42%) believed that the disease can be transmitted via blood transfusion. This misconception is misleading and can result in people refusing blood transfusion when critically ill which might have a devastating effect on their health outcome. This study observed that on the whole, people who attend tertiary institutions knew that avoidance of marriage between two people with incompatible hemoglobin genotype is the major means of preventing the disease and a similar finding was also reported by other studies [4, 8]. This knowledge will assist in preventing the incidence of the disease in Nigeria which ranks first among the endemic countries with sickle cell disease in the world [8]. There was a significant difference between the knowledge of sickle cell disease and the actual practice of pre-marital genotype screening from the study. Despite the good knowledge, high level of awareness and positive attitude towards sickle cell disease and screening for genotype, it was also observed from previous studies that majority of people did not know their genotype [8, 11. 14]. This is quite disturbing because the findings relating to poor practice of genotype screening is among youths in tertiary institutions with good knowledge. As such the situation is worse among individuals with poor knowledge as revealed in previous studies [11, 14]. This is a challenge to the nation that is currently recording new cases of the disease despite resources channel towards awareness.The passage I quoted from the study of 200 college students revealed that they were mostly knowledgeable about SCD, cause, and prevention. However, when it came to whether or not to get pre-marital testing done, the majority of them outright rejected the idea meaning ignorance had nothing to do with it but rather their blatant arrogance towards knowledge. ![]() Yet you continue to insist ignorance and poverty are to blame. It seems your mission here is to distort the facts for reasons best known to you so I will leave you to it. ![]() |
Re: Parents With Sickle Cell Kids How Do You Cope? by fastseo: 5:31am On Dec 02, 2023 |
Kobojunkie: Where was the research conducted? bayero university Kano environment Right? they recruited people from this university and gave them questionnaires to fill.. what do you expect? This are universities undergraduate who are well informed of the disease. But I am talking about people living in the villages with no access to formal education etc |
Re: Parents With Sickle Cell Kids How Do You Cope? by Kobojunkie: 5:34am On Dec 02, 2023 |
fastseo:Oh, now you want to make an issue of where the study was conducted, abi? Are the colleges mentioned not found in northern Nigeria where you pretend only those ravaged by poverty are ignorant? ![]() You are not making any sense at all. If even the SCD-educated ones among the people are equally arrogant, refusing to take their SCD status seriously, why do you keep fingering ignorance and poverty without proof? ![]() 3. Making fictitious claims about people living in villages not having access to hospitals and so in is bullsheet! ![]() |
Re: Parents With Sickle Cell Kids How Do You Cope? by fastseo: 5:38am On Dec 02, 2023 |
Kobojunkie: I asked again where was the people responding are from? They are from the citerdel of learning and a prestigious university at that matter. And most are youths who are born in 2000s. To get a true picture to fit into the entire northern Nigeria and to know whether there is significant relationship between ignorance, education, age, etc on the endogenous variable then they should move to the villages Or rather run a RCT Draw a sample from the city and draw a sample from the village... Run a randomised control trials To understand the causel effect. That's the only way to know whether ignorance (lack of education), poverty has a significant effect or not |
Re: Parents With Sickle Cell Kids How Do You Cope? by Kobojunkie: 5:55am On Dec 02, 2023 |
fastseo:Please stop telling ridiculous tales abeg! ![]() The Newyork Times link I had posted earlier was to a story of a man in the same Kano who though poor had access to hospitals yet had 4 SS kids. The family had lost 2 girls already to the sickness. The disease seemed to strike their daughters out of nowhere. Khadija, 9, had suffered a fever for a few days. It didn’t seem severe until she closed her eyes forever on a Friday in 2003.3 children all died from the illness. Yet they went on to have a 4th child who turned 9 in 2021 and was also SS — she was born in 2012 some years after the 3rd child had passed away of the same problem. And you want me to believe this family is ignorant of SCD? Come on! ![]() |
Re: Parents With Sickle Cell Kids How Do You Cope? by fastseo: 6:02am On Dec 02, 2023 |
Kobojunkie: You sounding angry. Calm down a little. Lets assume you are AS will you marry a partner who is AS? And why will you refused or turn down the marriage proposal |
Re: Parents With Sickle Cell Kids How Do You Cope? by Kobojunkie: 6:05am On Dec 02, 2023 |
fastseo:How can I sound angry when I am typing words with my fingers? ![]() If I desire to have children, of course, I would turn down the marriage proposal. Commonsense would turn down the proposal majorly because of the risk of having SS children. ![]() |
Re: Parents With Sickle Cell Kids How Do You Cope? by fastseo: 6:21am On Dec 02, 2023 |
Kobojunkie: Yes. because you understand and because you have perfect knowledge about the outcome and because you understand probability. More also because you understand your financial situation as at today. Someone like Dangote might not answer the way you respond... Why because he can afford to send the wife abroad, or follow strict medical rout to ensure that all children are born free. Some one with little or western education wont even border to pounder on the outcome... This is where ignorance lies. Someon might understand the risk involved and still go ahead betting on luck. Why I assumed it's ignorance, was that they never divorced or go their separate ways but kept on their marital vows up to this moment despite the pain. There was a case someone posted here on nairaland where they got married and first child was SS and they didn't know they where treating malaria now and then, until the doctors told the man to run a genotype on the baby.. That was when they found out and at that point, madam was also heavy and lastly the baby came out SS. So the man was filling for a separation. Probably the lab they went did an error or the wife wanted to get married at all cost bringing up a fake result. |
Re: Parents With Sickle Cell Kids How Do You Cope? by Kobojunkie: 6:38am On Dec 02, 2023 |
fastseo:1. In much the same way that having perfect knowledge and understanding of life and consequences can't keep one person from committing murder, so also, the choice I make isn't based on understanding but on my conscience as a human being. ![]() 2. Again with this rubbish! It is for this reason that I am glad I found the research carried out with a sample of 200 well-educated Bayero college students for you earlier. You claim someone with little Western education would make the opposite choice out of ignorance, yet what the research showed is that even those who had already been given lots of Western education equations made the same choice. ![]() 3. The assumption makes no sense whatsoever. ![]() 4. So, what you are desperately trying to make us believe is that in the case where couples decide to continue trying their luck for a healthy child, even after being informed— something that seems the likely case with OP's parents as well as the story from the NewYork Times link — you wish for us to blame ignorance instead? ![]() |
Re: Parents With Sickle Cell Kids How Do You Cope? by fastseo: 7:12am On Dec 02, 2023 |
Kobojunkie: No the research conclude that they hardly carry out pre sex genotype. People enter into relationships without asking what's each other genotype and children where produce. For that of the new York Times I didn't read it. It's subscription based.. I will change my IP to Nigeria n leta and go through it |
Re: Parents With Sickle Cell Kids How Do You Cope? by Kobojunkie: 7:26am On Dec 02, 2023 |
fastseo:1. If even knowing all they know of SCD refuse to carry out genotype screening before marriage, what does that tell you they plan to depend on? ![]() 2. I copy pasted the passage which I believed was most important but I will add the link here to the copied text here. https://www.nairaland.com/5898889/cure-sickle-cell-disease#127271227 |
Re: Parents With Sickle Cell Kids How Do You Cope? by femi4: 8:28am On Dec 02, 2023 |
Yemike:But why your parents continue to bring kids to suffer in this world is what I don't understand No 3, 4, 5- SS |
Re: Parents With Sickle Cell Kids How Do You Cope? by Toktee(m): 4:21pm On Dec 02, 2023 |
Greattha:It have never abandoned anywhere in fact it's been in use world wide. 1 Like
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Re: Parents With Sickle Cell Kids How Do You Cope? by Blake755: 8:59pm On Dec 02, 2023 |
Yemike:Here's my email colemanwillams890@gmail.com send me a message let's talk |
Re: Parents With Sickle Cell Kids How Do You Cope? by Blake755: 9:03pm On Dec 02, 2023 |
Toktee:It works on some people and not on everybody |
Re: Parents With Sickle Cell Kids How Do You Cope? by Toktee(m): 6:19am On Dec 03, 2023 |
Who told you or it's according to your research? Blake755: |
Re: Parents With Sickle Cell Kids How Do You Cope? by Blake755: 8:23am On Dec 03, 2023 |
Toktee:I have used it that's why am saying 1 Like |
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