Sickle Cell Disease is an inherited Hemoglobin blood disorder. It is passed from parents (Father and Mother) to offsprings. Hemoglobin which gives blood it’s red coloration is responsible for the transport of oxygen. Hemoglobin is normally round in shape but in sickle cell anemia, it is crescent or sickle shape as a result of genetic mutation. This shape malformation reduces the oxygen carrying capacity of Hemoglobin thus leading to the anemia seen in patients with sickle cell anemia.
I have a niece that’s SS….my God… whenever she’s in crisis I’ll end up crying with her.
Mummy it’s paining me
She keeps being in pain and in tears….it’s not easy at all
She’s still a kid,a very active one for that matter
She loves to play and run around,she doesn’t understand when we tell her not to.
Even if she’s sick,once she gets well she continues.
She can’t comprehend y she can’t play around when her younger siblings can
It’s always a very sad situation and I’ll never advise anyone to risk it.
I’m AS too and I know nothing can make me risk it. Even if I end of loving someone more than my life,I can’t take that risk. I can’t bear the pain……it’s too much and it’s really just not worth it.
I’ll prefer getting the heartbreak from the very start than getting myself in that mess
Pls do Some ppl think love can conquer Everything?…..it can’t
The love would wear out in the end
After spending lots of money,time,energy and all….most end up losing the kid…..that’s my worst fear
I’ve been praying to God about it……cos I don’t want to imagine that happening to her
I actually have a friend that’s AS and in love with a guy that’s AS……I’ve told her all I could but she’s like she’ll keep praying…..it doesn’t work that way.
Who says she won’t fall in love again if she leaves the guy?
It would hurt but it would pass,I’m sure it would
Nothing is worth all one would go through once you’re in that mess
Only if there’s something like knowing the genotype of the foetus b4 delivery but it’s same as murder…..y d stress….
Though some are luck by it’s better not to take the risk
Lots need to be enlightened about the dangers of this
[30/12, 21:20] Flamez🔥🔥: Hello good evening
There was a post yesterday about two couples of same AS genotype getting married
It broke n breaks my heart to see two love hearts being separated
Some of the comments section referred them as selfish lovers.
Some do not understand this modern world we based upon.
It is truly hard to find n keep the dream one, marriages today has been a defective task that must be considered n structured properly before being engaged upon. I love to sound different, I want solutions and awareness instead of complaints n regrets I stumbled upon something.
vitro fertilization (IVF)), may be used in humans or in animals, in which situations the goals may vary….
I also heard that genotype selection
: Can now be done during IVF cycle.
I don’t know how true it is. But I’m yet to make my research
🔥🔥: It’s not cool for SS cell patients or people to refer to most parents as selfish lovers. Yes some were out of ignorance.
But in life we have to pay for everything..
Eg we got cancer.
I might be AA with cancer
Or AS with brain tumor…
Life isn’t fair
Don’t be surprised, I have my blood brother as a SS patient, trust me I understand everything..
Thou He is well treated n taken care off. U barely know he is
I hope we can research on this..
My short reply.
I hope it’s a sensitive information
I like the response you gave and will like to buttress it.
Everything is advancing and technology is getting better over time.
The allele frequency for A keeps decreasing. If we have a responsible government, genetic clinics should be established to reduce the risk of birthing children that carrying any form of genetic disease.
What I am trying to point out is there are still other severe genetic diseases,that need to be prevented. Many people don’t know what they are susceptible. They just take ill suddenly and they get to the hospital and they are being diagnosed of Cancer,thalassemia.
Even as we speak people who are carriers are getting married presently.
I tell people genotype is not only genetic test you should do before you get married.
Do a complete genome test with your partner and see the kind of genes your child is likely to inherit.
Then you should bring up the child with a befitting lifestyle to reduce risks of those diseases.
Then you will also be guided, if you will need to do a pre genetic screening or conceive the natural way.
I hope one day, we will stand to take responsibility to fight those endemic genetic diseases over here.
Good day Miss Gbemisola ,For the lady that has a relation with SS
I encourage she gets *NICLOVIX* I saw this medicine online and it is for sickle cell patient to help reduce crisis and other symptoms of SCD(sickle cell disease)
𝕻𝖍𝖆𝖗𝖒𝖆 𝖀𝖕𝖉𝖆𝖙𝖊!
𝕻𝖗𝖔𝖉𝖚𝖈𝖙 𝖀𝖕𝖉𝖆𝖙𝖊:
𝖓𝖎𝖈𝖑𝖔𝖛𝖎𝖝(Formerly,NIPRISAN):
Niclovix is a locally obtained herbal remedy that has been shown through trials to be effective in preventing crises when used regularly. It inhibits the polymerisation of hemoglobin S, reducing the number of sickle cells and the severity of SCD. This allows the individual to live a crisis free life
Sickle cell anaemia affects over 3.5million Nigerians with over 50million Nigerians carrying the gene for SCD. We have to take responsibility to prevent SCD by choosing a matching partner. Complications of poorly managed Sickle cell disease include painful “crisis”. It occurs when the sickled cells get stuck and slow or even totally block blood flow, to some parts of the body
Others are anaemia, delayed growth, fevers, leg/skin ulcers, jaundice, excessive thirst, poor eyesight, strokes. Many of the current treatments have numerous side effects and require constant monitoring.
*Indications* :
For the Prophylactic management of Sickle Cell Disease
*Warnings* :
Strictly for Sickle Cell (SCD)Patients
*Dosage* :
Niclovix should be taken at meal time with water. The capsule should be swallowed whole
Children (5-11 years)- 1 capsule once a day; if the child cannot swallow, empty contents in a spoon, mix with water and administer
Adults & above 12 years- 2 capsules once a day.
*Benefits* :
It reduces episodes of acute pain
It reduces the rate of hospitalization
It prolongs survival
It improves growth in children with SCD
It reduces complications from SCD
It improves quality of life
It is safe for the patient with minimal side effects (very few may have headache)
It is affordable for patient reducing cost of treatment
*Presentation* :
Each bottle contains 30 hard gelatin capsules.
∆QUICK FACT!!!
*MAY&BAKER Bought the NIPRISAN BRAND FROM NIPRID,HENCE THE CURRENT NAME IS NICLOVIX.*
*PharmahubNG*
Thanks a bunch. She’s taking different drugs at the moment (recommended) but I’ll definitely tell her mum about this too.
Thanks…..I’m really grateful.
I’m glad I can write this here because I’ve always felt so insecured about my genotype…I guess with time I understood better and I’m not really insecured again….I’m sc and not ss ..quite similar yeah…I don’t go through a lot as much as people with ss do….I can go 6 months without falling sick but doesn’t make it any better though….The pain is really unbearable sometimes that I used to wish for death….I always read post on sickle cell diseases and people living with them and I can tell you that it’s not in any way easy,I always see people wish for death,others blame their parents and some even opt for suicide …now my reason for sharing this …please before getting into any serious relationship with anyone,your health should come first even before love…ask questions,know their statuses and go for medical tests to be assured..My Mum always felt bad whenever I felt sick,she told me she and my dad got tested before marriage but they had a wrong result that was unknown to them until I was born…my mum’s AS and my dad’s SC too…I have older siblings and they are both AS too …The pain is really unbearable sometimes and we honestly have to think of our kids and the future too….Someone told his parents before he died that he didn’t forgive them,he told them that they were so in love and didn’t think about the future and now he had to suffer for it… it’s a really crazy thing to witness…imagine not able to move your limbs, or the pain to be felt just by touching your skin, the compulsory drugs to be taken everyday of your life is really frustrating and tiring,the constant visiting of hospitals,medical bills and prickings everytime too🥺🥺…honestly at this point I don’t know what to say anymore ,other than please dears know your genotypes,it’s very very important.And I hope this will be a turning point to whoever wants to take a risk…Thankyou❤️
I m really Proud of you for Sharing This🙁. We might be Crazy in Love Today buh we shouldn’t let it be a Barricade to our Future… Health Status should be the most Paramount Condition to be Exercised before Marriage but instead, Generation of ours are mostly Obsessed with Love. Let’s all put this into Exercise and we shall Produce an Healthy Future
Thank you very much for sharing your story, I really appreciate…Our future children should be priority.It might not be easy but it’s still for the best.
It takes courage to share this. Thank you for not giving up and for sharing this. I hope it helps us all to make wise decisions
Sickle cell Disease (SCD) a clear indication that prevention is better than cure.
Incase you don’t know what SCD is, it is a disease that results from having an abnormal Red blood cell which is characterized by the sickled shape when viewed under the microscope.
The sickled red blood cells are very fragile and tends to die off easily but before they die, they may block blood flow to different parts of the body in which the body sees as pain (a severe one). Apart from this pain, the body spends so much time and energy producing new red blood cells and this overwork reduces the efficiency of all system. Also, the body put too much effort into enduring that dead red blood cells (residue) do not stay in the circulation to prevent other complicating.
we can see the stress and pain SS patients are subjected to, some patients wish for death.
AA can marry Any genotype while all others should marry AA.
Incase you are religious, then I tell you; the Lord God that has given us (human) the ability to detect genotype as given us enough to chose wisely, therefore, He will not answer your prayers when you face the consequence.
Okay
In this case
I know of a couple, the man a healthy carrier of the sickle cell disease, and having the knowledge of all these, they sought medical advice before marriage, the wife got checked and got her results which said she was an AA.
Hence, the marriage took place..
Years into their marriage with four kids, the wife got to realise she was an AS too,
So, as expected, all concern fell on their children, two boys and two girls.
They had to run a quick test on the children the first three came out as AS, then the last, whose result was just picked from the laboratory, came out an AS too..
So this is God at work, doesn’t mean you should try God, avoid it, avoid it first and don’t try your God, you are not to tell Him when He sould perform miracles, that it worked for Mr. A certainly doesn’t mean it will work for Mr. B…
It’s good they know now
But if they are madly in love, I suggest they get married and then go for an adoption..which may not keep them happy.Honestly, it really is painful, not just for the child, but the parents too
A girl who died last year on a cold night of sickle cell just got into her third year in the university, and that life was lost… A young girl, under twenty..
Leaving only her brother for the parents, whom is said to be an SS too.. what joy would those parents have
If it’s to train their children to an admirable age and level where they due off from a disease they could have prevented..
U are actually trying to play God…
Even when Jesus was tempted by satan… He stood away and ignored him because he knows God can not be played with. Or do u think Jesus did not have the faith that God could save him??.
Whenever a calamity want to befall prophet Muhammed (S.A.W) from the enemies then in Mecca, Allah will inform him and tell him what to do and he would never say because he has faith in Allah disobeying His command…
See, God knows jokes and understand when we joke among ourselves but he doesn’t joke with anybody… None of His words in any of the holy books had been a joke.
U have heard the truth and learnt the danger, u have the chance to stay away from it, but just because of a deception of feelings u call LOVE u now want to play GOD tying it with faith???
See God is not a fool, Only challenges that accidentally or coincidentally or naturally befall u and can’t be abstain from will God listen to…
If u set your aim on this trial u might end up regretting it, possibly having all your kids being SS (what a tragedy).
Don’t play God.
Have a rethink now!!!
Thank you very much for saying this…I hope people get to listen.
If accidentally or coincidentally, an AS or SS lady/woman got impregnated by an AS partner. After 6 weeks(if i am not wrong) of conception when the BRAIN and the HEART have not fully develop to make life possible, the SS or AS gravida(pregnant woman) of an AS spouse can go for a uterine-embryonic test to know the genotype of the embryo (unborn baby). If it turn out to be SS it can be aborted and if otherwise u let go of the baby.
This practice is legal only in some countries like Germany etc where abortion is legal but the opposite here in Nigeria. The holy religions also condemn it.
For this I have said, I am open to criticism, condemnation and suggestions.
My question now is if the result turns out to be SS should it be ABORTED to SAVE the impending CONSEQUENCE of painful experience(science says) for the baby being an SS or we should let go of the baby because of RELIGION DOCTRINE?
Remember, the pregnancy came up accidentally or coincidentally and not by intentionally going for a wrong genotypic partner…
I never knew that my friend was SS, no one knew. I suspected when she didn’t fast in Ramadan, when she switched to boarding my suspicion arose because she was always sick, she was even allowed to bring in a water boiler. She was my friend since primary school, and no teacher could flog her. She looked healthy, and that lessened my suspicion.
Then one day I met her crying, she didn’t want to tell me, till I kept asking. She blamed her parents, they were the cause, and no normal person would know the pain she was going through. I consoled her and told her it will be fine. I knew it will, I’ve heard so many worst cases of SS, hers was better. She was afraid of the stigma and told me not to tell our classmates.
SS is something no one should play with, no matter how in love you are, you shouldn’t risk the happiness of your children.
Also, some of these tests are wrong it happened to me, I got different genotypes from two hospitals. I hope that could be corrected so I’ll go to a third hospital to check.
This is serious!!!!.Really?..People need to stop this already…It’s not even funny..She should think of the innocent children she’d bring into this world..Most “ss” children hate their parents silently,they might not just speak up.They grow up, living most of their life using very expensive drugs,unbearable pains😔..
She wants to “marry with faith”..How’s that possible??..She should please think of her future children..I know love is important but still..The love for her unborn children should be more.
I’m not SS or SC but when I see these set of people I feel their pain . Recently in one of the hospital I’m going to we had a sickler patient. The kind of pain she goes through when this crisis starts I can’t explain. A lot of people out there are not aware of this and those who are aware are blind folded with love,We have to be very careful now because of tommorow. Such risks should not be taken in other not to endanger the life of unborn children.
I have a distant cousin who is a sickler. I sometimes help her pray for death.
Is it the pain she go through every night I want to talk about??
When she was like 15, she started having a distorted leg shape, after a while it became permanent.
There was a time she was sick and was asked to do blood test, it was discovered that all her blood had turned black, I had already lose hope that day cos I was 100% sure she would die .
She is almost like 27 but she looks like 15yrs old.
It really breaks my heart seeing her like that.
I was in the hospital one day and this one year old had to be tested her PCV was extremely low, she was SS, her parents denied is, they said they believed it was not their portion, they even refused the girl being admitted till she almost died, the little girl was in pain, she kept on crying and even when she didn’t have the strength to cry anymore, she just laid there, looking lifeless, I am a Christian but I can never imagine having to see my child go through so much pain as a parent, religion is not stupidity.
Eccl 10:10…wisdom is profitable to direct.
There is absolutely no reason why anyone should go through so much pain
There was a family I know who has 4 children with ss and the man was a retired civil servant, during this lockdown, one of the ss siblings got ill and was admitted in a general hospital for almost two months, he developed osteomyelitis and along the way few days later two of his siblings also went into crisis so it becomes very difficult for the father to cater for the family and at the same time provide the health care for his three children. When the father noticed that the first child’s condition wasn’t getting any better, he decided to give up on him paying little attention to him ànd putting in more effort on the rest of the siblings
I approach the father,mother and their eldest son, counsel them about the condition ànd letting them know that it’s not the child’s fault that he’s is a SS and neither was his fault for being sick, I advised them to refer him to a tertiary hospital and the father told me he doesn’t have money for that. Whenever I visit the child he always gist me how his family abandon him and was even telling me he know he’s going to die.
After some days I went to d hospital to visit him and I was told he has been discharged, I was surprised and I asked if he has get better and they said no but told me that they can’t afford medications,this makes me weep😢
The next day I heard the news of his death. I cried whenever I think of such situation.
Pls prevention is better than cure, and do well to save your children from experiencing such a hard, painful and agony life. Living all your life in pains is not worth it we can prevent this, so let’s do the needful. Thank you!
I haven’t said anything in this issue all this while buh…
Now i think, the parents in just bringing then into this world are committing grave offenses….
It should be counted as a sin…..cos yunno the right thing to do and you refuse to do it thinking Faith will prevail….
The Word says “in all thy gettings,get understanding!.
Kai.
Understanding which is *key* has been given to you through determining the blood type…😪🤧 it’s just so sad really.
Like….
How does it sound it sound normal to bring a child into this world at the expense of his or her life??
People need to rethink their decisions and not put faith where it shouldn’t be. 🤧🙏🏿
The most annoying of this sickle cell anaemia of a condition is that people are still giving birth to sickle cell children in this age. We are in the twenty first century for crying out loud. Even if our forefathers had no idea what genotype is and all, people still making mistakes or intentionally going into a marriage knowing fully well that there is a possibility of giving birth to SS children is annoying, in the very least.
Someone told me of a person that she knew in primary school, she is the fifth child of her family and the only SS. After hearing this, I thought: how selfish can people get? You got married to someone that would possibly give birth to a sickle cell child in the first place. God helped you, your first child,
fine; second fine, third fine, fourth child perfectly fine, and you had the mind to give birth to another. The fact that they had four children in the first place is selfish, no offense
My point is that one, no amount of love should move one to marry without counting the cost of what will result from one’s marriage. Love should not be that blinding as not to see one’s future and the future of one’s children
Two, if one eventually get to know after marriage that both partners are AS and you give birth to one child that is AS or AA, it is better to stop after that one child
Three, it is selfish on the part of people to keep believing in some type of miracle or ‘hoping’ that they will not birth SS children even though it is scientifically and medically possible. Doing this has often resulted in torture for the innocent children, pain and frequent visits to the hospital; even gradual sorrow for the parents, regret for their earlier decisions. The parents will even have no time to enjoy their lives as a couple because of stress.
Fourth and the last, knowing one’s genotype and that of one’s prospective spouse is very important.
Please let us not be selfish because of love. Love can fade away if bad decisions are made. Thank you
People be thinking this genotype compatibility thing is a joke.
I came across a patient during my neuropsychiatric posting, she had a diagnosis of acute depression.
Hx: The woman is AS is same with her husband, they had their genotypes checked before marriage and it showed the husband was AA. Fast forward to post marriage, they had their first child, it had HbSS an died within the first two years of life, same with the second child. At this point it was obvious they both carried the genotype AS. They stuck together and had 6 children in total. All the children died, the last one grew to a ripe age of 21 and had just finished his University education before he died.
After the last child died, the husband left the woman for another woman, at this point she’d already reached menopause. That was when depression set in.
This thing is no joke. Know your genotype, check and recheck use different labs if possible. Don’t let your eyes be clouded by dumb love.
I lost a big sis about 2 years ago, she was SC. She died about 2 months to her convocation.
We lost one of my undergraduate classmate shortly before Christmas because of this matter😭😭😭😭, while in school although very intelligent was always absent from classes because of sickness. Imagine how difficult it would have been for him to cope with those pains and school work just for him to die after NYSC😭😭😭, does it worth it? I don’t think so.
I’m As, but all my siblings are SS. I lost one of them three years ago and I can’t say how difficult it was. But it’s nothing compared to what my siblings live with everyday. Theirs is not as bad as some and they’re taken care of but I still live with constant fear of what can happen. My parents marriage is nothing now. My dad has two other children from someone else. All I can say is if giving up someone you love is what it takes, do it. It’s not a joke, it’s the life of the children.
My elder sister was ss,she had suffered alot,she had faced many challenges from family level to community, she passed away in March of this year after suffering from stroke
I can’t really blame my parents, Dad was given a wrong result(AA), mum is AS, three out of 4 SS. The last had it tough, there was a period he had crisis every three days. I had it rough once, a week of pains, now I haven’t had a crisis in over a year, I’m 19 but look like a 14yr old.
Cos of it, I do no extracurriculars, I don’t do sports as I’m plagued with dizziness and frequent weakness.
I haven’t had a transfusion, never been to the hospital cos of it, just folic acid and b-complex everyday.
I don’t understand why people stigmatize those with SS, like it isn’t our choice, we have to live with it.
I’ve come to terms with it, after all, life’s not fair, learnt to live with. I’m not worried about me but my 13 year old brother who doesn’t understand the terms to it. He’s very hyper, so he has crisis frequently, always in pains.
People will say they’re in pains but I understand pain. Now I don’t really feel pain because what others term as pain doesn’t come close to what I experience.
I just hope I find love at the right place, as I’m holding back to falling in love. I’ve always wanted to be in a relationship but I can’t.
I pray we all find peace with it.
From the movie strain (on netflix),i learnt that Sickle cell can be treated with bone marrow transplantation from a matching sibling.many sickle cell victims dont know about it.I ve really got questions.. Do you know about it? Izit really beneficial? What are the risk involved?
Also what is the average life span (age) of Sicklers?
Explain the relationship between sickle cell and malaria
What are the daily drugs for sicklers
How do we curb their dependence on addictive pain relievers like tramadol, pentazocine….thank you