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Nairaland Forum / Nairaland / General / Health / A Day In The Life Of Someone Living With Sickle Cell (13915 Views)
The Oldest Person With Sickle - Asiata Onikoyi-laguda / Misconceptions About People Living With Sickle Cell Disease / Inspirational Tweets Of People Living With Sickle-Cell Disease. (2) (3) (4)
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Re: A Day In The Life Of Someone Living With Sickle Cell by Toktee(m): 1:46pm On Oct 29, 2012 |
I go visit tb joshua,by the time i come back,ss will not be found in my dwelling place,op take note,just visit tb joshua evry problem has solution |
Re: A Day In The Life Of Someone Living With Sickle Cell by Abali1(m): 1:47pm On Oct 29, 2012 |
At all those viewing this story, let me tell you one thing you all should remember. IT IS FROM PITYING SS PEOPLE THAT THE STIGMA ARISES. Like they are lesser beings whom the gods have dealt with. Before you know it, conciously or uncousiously you will want to protect them "FOR THEIR OWN GOOD", but in truth you are just killing their self esteem. 6 Likes |
Re: A Day In The Life Of Someone Living With Sickle Cell by freecocoa(f): 1:48pm On Oct 29, 2012 |
Abali1:Okay it is a sensitive topic for you I get it, she didn't come here to ask for pity, she wants people to know the risks involved with raising an SS child, where's the crime in that? Would you rather people go ahead and bring in SS children into the world because the condition can be managed? You are SS and its not your fault but that doesn't mean people can't talk about the pains associated with it, its educating to know that instead of trying to manage the situation, its best to prevent it. 2 Likes |
Re: A Day In The Life Of Someone Living With Sickle Cell by freecocoa(f): 1:51pm On Oct 29, 2012 |
Abali1: At all those viewing this story, let me tell you one thing you all should remember.You are getting unnecessarily too emotional, you were stigmatized we know, stop making it look like that's what we are doing here, get over the issues already, ahn ahn . |
Re: A Day In The Life Of Someone Living With Sickle Cell by Nobody: 1:52pm On Oct 29, 2012 |
Abali1: @ITSMODELLA,Wow, this is the first time I'm hearing of genotype being included in a job questionnaire. I am dismayed that the people who claim to accept by merit discard that principle based on genotype. The world is not an easy place and you're right, you can't change its view but you can learn to interpret your own view the way you want to. While we discourage couples not to marry based on incompatible genotypes, we also have to encourage and tolerate those with SCD. Awareness is the key in everything. 2 Likes |
Re: A Day In The Life Of Someone Living With Sickle Cell by Ticklishmummy(f): 1:56pm On Oct 29, 2012 |
OP,I am really dissapointed in you! Whilst you probably meant this to be some sort of enlightment looks to me like you are scouting for pity.Why? You dont need it dear. If you dont know,look into the society and you will realise that people with disabilites are blessed. Should I start mentioning names from past till present? By the way, you sound like you are limiting yourself,because you have got sickle cell. Too bad.I dont want to berate you too much but my dear, You are a warrior.You are an overcomer,make no mistake about that. God has a reason for everything, if people have kicked the bucket as a result of this illness it can ONLY be because God has willed it to be so and because it has been predestined.If I were you,I will tell God to make beauty out of my ashes. You dont need to do all,this to yourself. All these stories abound on the web, negativity everywhere, but on the very same web where all the painful stories abound you also read of people who are WARRIORS,I mean SICKLE CELL WARRIORS. Who have carved a niche for themselves and are living the best of life. As a matter of fact now,there's loads of people with the disorder who look even better than those with a supposed healthy lifestyle and until they open their mouths to tell you,you will never know! Do you want to to live your life seeing the glass half full or half empty? Never,you wear sickle cell as some sort of invisible badge cos you are unconsciously limiting yourself. Have a look in the mirror again my dear, you are a special breed,start tapping into that mentality. Yes,sickle cell is real and well all that comes with it, but guess what, the choice is up to you whether you want people to identify you with that or with your ACHIEVEMENTS! If you are a christian,use your medication like you should and ask God to keep you hale and hearty and if you are also a muslim same applies.Dont start dwelling in self pity,trust me you have got a great life ahead of you,if you live a healthy life-style,avoid the triggers and commit your ways to God. You will get married to a man who will love you and cherish you,you will have great kids and yes I say this to you cos I have seen it happen and you will not be an exception. The life expectancy of people living with sickle cell is now high, gone were the days of low life expectancy. I live in the UK and am not ashamed to say I support every sickle cell cause because the African mentality is poor when it comes to this issue. Its almost like the stone age applies when it comes to sickle cell. The western world is working so much to discover a cure. Dont be decieved,its not like its a difficult or impossible task,its just cos its a black scourge and what are the blacks themselves doing about it? Next to nothing?! Take a cue from this,HIV,AIDS became a global scourge,it was looked into asap! so why not Sickle cell Anaemia that has been in existence for donkey years. Time for everyone, to get involved, I always feel sorry for people who say ''oh am AA,cannot be bothered'' Do you honestly know what might happen tomorrow, what if any of your sibling gets stuck in a relationship that produces a SS child,would you act indifferent or concerned? Time for every black person to get involved, there is indeed a cure for sickle cell, lets all support the cause, form pressure groups, people here, write to their MPs to support various causes from sensible ones to purely stupid ones, well back home we can write to the government,contact the 'contactables',press all the buttons pressables. It begins with us all. My dear,you dont need pity stories please raise your head up high,be proud of whom you are and for everyone else,we can only strive to love everyone as ourselves by supporting in every little way we can. 4 Likes |
Re: A Day In The Life Of Someone Living With Sickle Cell by fulli16(m): 1:57pm On Oct 29, 2012 |
owkey... @ OP i hope u read dis!!! (i really shouldnt b saying dis buh!...who cares?) my genotype is also SS... my eyes re constantly yellow in color(i do get doz embarrassing questions bout ma eyes), i have been really close 2 death many times, i get paralyzed most times malaria strikes(i cant forget d period when i couldnt use ma legs for over 2 weeks)...and so on... but the good news is 'i have my family and my God' to me, dats all dat matters! i still believe no one has control over my life except d person who gave it to me, i assure all those of you who are planning to ignore genotypes before getting married, u wouldn't want to go through wat my parents went and re still going through...be careful!!! 1 more tin(abeg i no want sympathizers near me o ) cause either d evil likes it or yes, i go see my grand children...no b today wey e start 2 pose empty treat 4 my life...d devil too hate me cause i don frustrate e life tire Na God o!!! 9 Likes |
Re: A Day In The Life Of Someone Living With Sickle Cell by Abali1(m): 1:58pm On Oct 29, 2012 |
[quote author=freecocoa]Okay it is a sensitive topic for you I get it, she didn't come here to ask for pity, she wants people to know the risks involved with raising an SS child, where's the crime in that? Am sorry if I come across as being mean to the op. When it comes to the issue of AS/AS marriage, I always discourage the couples. Not beacause I don't believe that God will see them through, but Like you said prevention is better. Above all, am just interested in letting people know that with modern medicine and constant research going on for the cure of SS, a SCD person can live a normal life. 1 Like |
Re: A Day In The Life Of Someone Living With Sickle Cell by Nobody: 2:00pm On Oct 29, 2012 |
Thank you all for the feedback. For those who think I came here to sell out my story, you have it all wrong, as I said before now, this story about the pains and argony occured years back. I was motivated to write this story because of the feedbacks I read on some threads here on nairaland. I didn't come here to earn anyone's pity. I am a strong woman. Contrary to what someone said about me being a cry baby over this issue, the "crying in the closet" happened over 10 years ago, when I was much younger. All through my life till this very day, I've not earned pity from anyone and I don't need it online either. I ΑМ PROUD OF WHO I ΑМ, I'm proud to be me and no one else. I've being to many hospitals, seen many doctors and at each instance, the doctors argue right in front of me that I can't be suffering from the disorder because I'm way stronger than most AA people out there. I'm a survivor and I'll continue to survive This thread was only created for enlightenment and I hope it serves its purpose Thank you 14 Likes |
Re: A Day In The Life Of Someone Living With Sickle Cell by auschris: 2:01pm On Oct 29, 2012 |
This is indeed an interesting topic. I'm affected. Two of my siblings went through the same ordeal. It's not an experience you will wish your enemy. I can't forget the sleepless nights occasioned by crisis, the anguished cries, missed days at school, stunted growth, and the 'ever-present' fear of what will happen the next minute. My advice to intending couple who are both AS is that they should reconsider their decisions before they delve into the abyss of guilt that accompanies the presence of a child with SCD in the family. There's more to marriage than love. However, if you are SS, you can marry an AA.(my sister with SS is happily married and has been crisis-free for a long time. all thanks to God) Thanks @OP for bringing this issue to the front burner. I pray that God sustains you. 1 Like |
Re: A Day In The Life Of Someone Living With Sickle Cell by Ajibolar(m): 2:02pm On Oct 29, 2012 |
Sorry about the pains you go through. Have you heard or read about Rev. P.O Ogunyale in Oyo Town? Google his name please. He has done research and has remedy for the Sickle Cell anaemia. He doesnt advertise, but has herbs for it. All the best! |
Re: A Day In The Life Of Someone Living With Sickle Cell by Abali1(m): 2:04pm On Oct 29, 2012 |
freecocoa: You are getting unnecessarily too emotional, you were stigmatized we know, stop making it look like that's what we are doing here, get over the issues already, ahn ahn . My dear am not being emotional at all. The op, going by this story is by far younger than me and I bet you, she will get to the REAL STIGMA stage. That is why it looks as if am against her story. She needs to start building a HUGE SELF ESTEEM, cos it will really help her go through this stage. She needs to count all her blessings and weigh them against the "percieved" curses. |
Re: A Day In The Life Of Someone Living With Sickle Cell by jpphilips(m): 2:06pm On Oct 29, 2012 |
apocalypse: I doubt this story is hers but a means to gain support for her own choice. With the advancement in medicine and science as a whole , ending your relationship with your other half based on genotype is no issue , come on information is everywhere - use it. If you dont want to reap the fruit of evil, flee from the devil's vineyard 1 Like |
Re: A Day In The Life Of Someone Living With Sickle Cell by Abali1(m): 2:07pm On Oct 29, 2012 |
Tlinkz: Thank you all for the feedback. Am truely sorry if I come across as mean. We are a Kindred spirit. All the best. 3 Likes |
Re: A Day In The Life Of Someone Living With Sickle Cell by Nobody: 2:10pm On Oct 29, 2012 |
pinky85: Eeeyah !, @ OP Wow . . . I'm loving you right now! 1 Like |
Re: A Day In The Life Of Someone Living With Sickle Cell by fulli16(m): 2:11pm On Oct 29, 2012 |
oh!!! i forgot 2 add sumtin 2 ma post How does a hospital bed feel jux asking coz i havent layed on one... Oluwa dey my side!!! 1 Like |
Re: A Day In The Life Of Someone Living With Sickle Cell by Tirham1: 2:11pm On Oct 29, 2012 |
Re: A Day In The Life Of Someone Living With Sickle Cell by jpphilips(m): 2:15pm On Oct 29, 2012 |
Abali1: At all those viewing this story, let me tell you one thing you all should remember. @ the bold quote; i remember they were taken to the Evil forest during the olden days, said the gods struck them lol @ poster, your story is quite touchy but i have loads of SS friends and they seem ok to me, is there something they are doing that you are not? |
Re: A Day In The Life Of Someone Living With Sickle Cell by Dreystar(f): 2:17pm On Oct 29, 2012 |
I don't see anything wrong in the op's story in a bid to enlighten us all. Wondering where her post showed she's craving for pity or something. Or didn't I read what you guys read too? Judging someone so quick! Unfair |
Re: A Day In The Life Of Someone Living With Sickle Cell by Nobody: 2:17pm On Oct 29, 2012 |
Tlinkz: Nlanders, I’ve been visiting this forum as a guest for quite some months now, and during my visit I came across some thread about Genotype and Marriage, or how a relationship ended due to genotype issues. After reading some of the comments on these threads mentioned above, I was stunned at some people’s mentality about the Sickle Cell Disorder(SCD) which can only be inherited from Hb AS parents. Some people think it is worth taking the risk, but trust me, it isn’t worth it. Having personally lived with Sickle Cell Disorder for over twenty years decided to share with you[b] “SOME MOMENT IN THE LIFE OF SOMEONE LIVING WITH SICKLE CELL”[/b] I hope after reading this, you’ll be able to have a clearer perception on why Genotype and Marriage should be taken more seriously. My heart goes out to all who might have been hurt at one point or the other because of this genotype issue. I know you are going through something really difficult and I can't even begin to pretend to understand. But look at the bright side . . . you have a family that absolutely loves you! Your parents and siblings will ALWAYS be there to help you through it. Some people are not that lucky! I've seen people with SCA who don't go to school cos their parents don't want to 'waste' money on their education! You have a strong support system, please make use of it. When you feel down, talk to someone, your dad, your mum, siblings e.t.c. Please I beg you, do NOT keep your pains to yourself. It's only eat you even deeper! Trust me, no matter how sad and sorry you feel, your parents feel even worse . . . . You can help them by sharing your pains and not bearing it all alone! I can tell you as a mother, that what hurts more than watching your child suffer, is NOT knowing she is suffering! A parent derives joy buy having to share in her child's pain . . . it gives them a sense of fulfillment. What I'm trying to say with all these my long post is that, don't try to hide your pains from your family. You may think you are 'shielding' them, but you are only hurting them more. Please let them help you. 1 Like |
Re: A Day In The Life Of Someone Living With Sickle Cell by auschris: 2:18pm On Oct 29, 2012 |
For those of you insinuating that the OP is seeking for pity, you got it wrong. If you have lived with anyone with SCD, you will attest to the fact that they are among the strongest people around. Their threshold for pain is much higher than that of most of us. They only cry out when it becomes unbearable. I have never come across anyone with SCD who refuses to carry out any activity on the pretext of "I am a sickler". The main purpose of this post is to enlighten us on the agonies of being a sickler. An understanding of these, I believe, will help us in taking appropriate preventive measures. 2 Likes |
Re: A Day In The Life Of Someone Living With Sickle Cell by Techwriter: 2:19pm On Oct 29, 2012 |
Here's my judgment @OP: thanks for the enlightment, it is a serious message to some of us that are still single, searching, and confirmed AS. I don't think you were seeking pity. I also read the story of the lady who was devastated becos her r/ship was genotypically put asunder and I wish she reads this thread @Abali: thank you so much for that "fight" you put up, peple are alrdy coming from the angle of pity which is not necessary. Even though u sounded a little harsh at some point, but I understand why it became necessary @Freecocoa: I think you are the one that is quick to vent emotions on every issue. I remember how u spoke during the ALUU 4 threads. If you are this emotional online, I wonder what you would be offline. I don't know your age but I advice you keep your silence in any matter too hard for u to handle emotionally |
Re: A Day In The Life Of Someone Living With Sickle Cell by jpphilips(m): 2:21pm On Oct 29, 2012 |
ItsModella: @ bold quote ignorance! ignorance! ignorance! any organization with medical benefit or medical insurance must check TB, HIV, Genotype then others. thats why loads of peeps dont make it past medicals even when successful with interviews. |
Re: A Day In The Life Of Someone Living With Sickle Cell by Nobody: 2:22pm On Oct 29, 2012 |
Abali1: At all those viewing this story, let me tell you one thing you all should remember. You call it 'pity' I call it 'empathy' . . . A little kindness has never hurt anyone! SCA is a health condition. You can't wish it away by pretending it's not there! There is NO stigma in SS as far as I know (except maybe the one you imagined) . . . |
Re: A Day In The Life Of Someone Living With Sickle Cell by Nobody: 2:26pm On Oct 29, 2012 |
jp philips:I have applied to jobs where I wasn't asked for genotype even though I was asked for health records. |
Re: A Day In The Life Of Someone Living With Sickle Cell by agohavivi(f): 2:27pm On Oct 29, 2012 |
Mynd_44: Very touching story. I also subscribe that parents should not risk having kids with that disorder but that should not stop them from getting married. Why should you not marry your love cos he carries a gene. Kids can be adopted and y'all will be happy.How many people adopt children knowing fully well that they can actually have theirs? My dear, this is easier said than done. If one has to follow your opinion it would mean going for a permanent family planning procedure just to ensure you don't bring a child who would go through so much pain throughout his/her lifetime, isn't it? Why go through all this all in the name of love? Believe you me, a lame excuse such as love is not worth taking such a life threatening decision. |
Re: A Day In The Life Of Someone Living With Sickle Cell by auschris: 2:31pm On Oct 29, 2012 |
Ujujoan:Seconded. We have to realise that this is difficult thing to. I remember that my sister used to bear pains with a 'smile' on her face and only cries out when it becomes unbearable.its just in the 'nature' of pple with SCD to bottle their pains. They do not want to be seen as a burden to others. They hate to be the focus of attention because of their condition 1 Like |
Re: A Day In The Life Of Someone Living With Sickle Cell by Nobody: 2:36pm On Oct 29, 2012 |
Well I'am SS and the op is right its a hard life filled with the kind of pain that most people can never imagine! It is also especially hard in this environment where people are likely to stigmatise one. An ex's mother told him that I would waste all his money on hospital bills and still die young! These kind of statements are made by even so called Christians and you wonder who any man is to think he can determine how or when another person will die. Well I'am still very much alive, doing v ery well in all areas of my life and while its certain that one day I'll die so will everyone else even if its from typhoid, car accident, plane crash or even bomb blast. As for the issue at hand, there are many options for anyone facing such a problem. Please don't bring any child into this world to suffer. You have to right to gamble with your childrens lives. However if you truly love the person and you are ready to make the required sacrifices then there're a no of options. As some people have mentioned you can adopt. Another option is IVF using a sperm donor or egg from an AA person. You can also do preimplantation selection via IVF. That way the doctors will use both ur sperm and eggs but check for the embryos without SS genotype and implant only those in the woman. Obviosuly these options cost money but they're not as expensive as many people think just find out from a fertility clinic and by the way its still way cheaper than the cost of living with sickel cell which isn't cheap at all. A cheaper option is to get pregnant on your own then check in the early stages and abort if its SS however I knw for most peole this will clash with our religios beliefs. So please do your homework and pick the option that works best for you. 4 Likes |
Re: A Day In The Life Of Someone Living With Sickle Cell by jpphilips(m): 2:38pm On Oct 29, 2012 |
ItsModella: in Nigeria? which health record doesn't carry Genotype anyways |
Re: A Day In The Life Of Someone Living With Sickle Cell by jephiano: 2:50pm On Oct 29, 2012 |
OP: thanks for sharing. People in 'love' (especially the young) often have this gree-die spirit when it comes to relationships, wrongly believing that there is only one person for them or nobody can love them like this person despite their numerous weaknesses or even that they are so compatible with so-and-so person that they are even a perfect match. This clouds their judgement even when they are both AS. I know because it happened to me. I broke up with two ladies due to genotype but the third one wasnt easy. If not for her bad character that later developed i might have been somewhere by now worrying each time she gets pregnant if the child would SS or not. Tufiakwa! Men i did gentotype tests like 7 times; 2 tests proclaimed me AA while 5 confirmed me AS. This further made it hard to end the relationship. Well we thank Jah it ended and i married a lovely lady thats AA(yes o i had her tested like 3 times in different places!) Hence some of us evidently need such info so as to know the harsh realities of the condition and know if we would willingly wish to subject our future kids to this. |
Re: A Day In The Life Of Someone Living With Sickle Cell by Abali1(m): 2:58pm On Oct 29, 2012 |
[quote author=Ujujoan There is NO stigma in SS as far as I know (except maybe the one you imagined) . . . [/quote] I will like to believe that it is my IIMAGINATION. But the truth is am living it and other SS people are living it or will live it. Trust me, you don't want me to tell you stories. Cos, everyone will be going eeyah. It's good taliking or discussing with people like you who OPEN MINDED, even if it on NL. 1 Like |
Re: A Day In The Life Of Someone Living With Sickle Cell by Abali1(m): 3:04pm On Oct 29, 2012 |
@Ujujoan, please read Tatiana009' post. Is that an imagination also. |
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