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The Facts And Myths Of Sickle Cell Disease - Health (4) - Nairaland

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The Facts About Condoms / 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: The Facts And Myths Of Sickle Cell Disease by johnsonerhis: 6:42pm On Oct 31, 2012
@Abali and @ All pls can u pple share light on wot AS pple go tru. I have AS friend and he seems to experience some of d things u ve described so far, pls share some light
Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 7:03pm On Oct 31, 2012
amarush: Hubby had been tested in naija and was told he was AA, but the hospital wanted to test him also, Anyway, hubby was tested and he was also AS, he was sooooooo shocked as tested as a teen and always belived he was AA. We have two kids, the first is AA (3 years old) and the second is AS (7 months old).

btw his older sister was tested in naija and told she was AA, she was retested over here (UK) and is infact AS, luckily her husband is AA. They were both tested a number of years ago and i hope that the procedures have tightned up. Misdiagnosis is no joke.

This is the type of "Miracle Lab Result" you get from some Naija lab. Then someone will tell you that S/he was once a SS and now AA.
Re: The Facts And Myths Of Sickle Cell Disease by Cupidkc(m): 7:04pm On Oct 31, 2012
op nice wrt up. Though ur campaign shld b championin against AS/AS marriages because dts d bst way 2kil sickle cell and sav ppl 4rm d crisis whc u rgtly said u wont wish ur worst enemies.

1 Like

Re: The Facts And Myths Of Sickle Cell Disease by koolsasy(f): 7:04pm On Oct 31, 2012
@ last post

AS people dont go through anything. they are as normal as can be. they hardly get malaria as compared to AA. if your friend has some symptoms discussed, then he/she needs to check the genotype again and again. alot of misdiagnosis going on this days...i can give a million examples.

i dont know if the blame is on the labs or what.
Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 7:09pm On Oct 31, 2012
johnsonerhis: @Abali and @ All pls can u pple share light on wot AS pple go tru. I have AS friend and he seems to experience some of d things u ve described so far, pls share some light

AS people are have the Traits of Sickle cell. That means, that some of there red blood cells are SICKLE in shape. In other words they are mutated. (if I am wrong Doctors should correct me, we are all learning).
Even if the person should have some of the experiences SS people have, it should be very mild. (Don't forget that some SS people who look healthy, will not want people to know that they are SS).
my advice, go to a good lab for genotype testing before you go too far.
Re: The Facts And Myths Of Sickle Cell Disease by debojyde(m): 7:10pm On Oct 31, 2012
blink182: stop propagating this nonsense. Will you give a guarantee that your scenario will always work?

Did u study Maths in primary or secondary school? Have u read what I wrote? Which is ur problem , understanding the concept of probability or understanding the English . PROBABILITY MEANS NOTHING IS GUARANTEED. THERE IS NO " ALWAYS " IN ANY SCENARIO REGARDING PROBABILITY. TO BETTER UNDERSTAND, REPLACE THE WORD PROBABILITY IN MY PREVIOUS STATEMENTS WITH THE WORD CHANCE.
Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 7:14pm On Oct 31, 2012
Cupidkc: op nice wrt up. Though ur campaign shld b championin against AS/AS marriages because dts d bst way 2kil sickle cell and sav ppl 4rm d crisis whc u rgtly said u wont wish ur worst enemies.

I am against AS/AS couples marrying. I am only telling my story, because a lot of people are mis-informed about the kind of life SS people live. When most SS people get to marriageable age, the stigma against them begins. Forget that so many people are educated and "enlightened" but it is only very few people that are open minded, including people that should know better....THE DOCTORS.
Re: The Facts And Myths Of Sickle Cell Disease by ACM10: 7:19pm On Oct 31, 2012
johnsonerhis: @Abali and @ All pls can u pple share light on wot AS pple go tru. I have AS friend and he seems to experience some of d things u ve described so far, pls share some light
AS or sickle cell trait people can only experience a mild symptoms of sickle cell in areas with low oxygen tension like high altitude, rooms with poor ventilation, etc or they may not have any symptom at all.

@Abali,
You are doing a great job in exorcizing the spirit of ignorance which makes people to believe certain stereotypes or stigmatize against SCA patients.
I must tell you that sickle cell disease(SCD) is all encompassing term which includes AS, SC, SThal; while sickle cell anaemia(SCA) is solely reserved for sicklers(SS). Pls note the correction. You did justice to the general knowledge of sickle cell. I wouldn't want to labour you with the advanced knowledge of it, because it's of no benefit to you in the management of your case.
Bravo!
Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 7:20pm On Oct 31, 2012
richie-x:
Hi Alabi1, was just reading through your post and i believe there are now advanced ways for couples who are both AS/AS to have healthy children. I did my genotype test and was told i was AS and was refered to Manchester genetics for help and they actually had some advice for me.
They recommended IVF, called (gene selection) for the unborn and also bone marrow transplant for the child already born as well.

Also, my friend whose baby is just three took his daughter to India for a bone marrow transplant and as we speak, her bone marrows now produce normal blood cells rather than the deficient sickle shaped one, she plays and runs like a normal child.

And oh!, i'm still single.

My dear, all you listed above are expensive procedures for an average Naija couple who are probably struggling to make ends meet.
Moreover bone marrow transplant have it's own difficulties. That is finding a WILLING DONOR WHOSE BONE MARROW MATCHES YOUR OWN.

1 Like

Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 7:28pm On Oct 31, 2012
ACM10:
AS or sickle cell trait people can only experience a mild symptoms of sickle cell in areas with low oxygen tension like high altitude, rooms with poor ventilation, etc or they may not have any symptom at all.

@Abali,
You are doing a great job in exorcizing the spirit of ignorance which makes people to believe certain stereotypes or stigmatize against SCA patients.
I must tell you that sickle cell disease(SCD) is all encompassing term which includes AS, SC, SThal; while sickle cell anaemia(SCA) is solely reserved for sicklers(SS). Pls note the correction. You did justice to the general knowledge of sickle cell. I wouldn't want to labour you with the advanced knowledge of it, because it's of no benefit to you in the management of your case.
Bravo!

Please, if you have an advance knowledge of it you can share it with us. Am really interested in knowing all I can about the SCD. It may not seem of benefit now, but it maybe useful later. Thanks.
(I can put my email here, if you wouldn't want to share it with the public)
Re: The Facts And Myths Of Sickle Cell Disease by rezzy: 7:29pm On Oct 31, 2012
My friend's bother in law and wife are both AS. Their first child a boy has SCA and second child a girl is AA. The girl is abt 8yrs now. My friend told me that anytime the lady is pregnant (say about a month), a test will be carried out on the foetus to know the genotype, it has all been SS and an abortion will be carried out and she has done up to 6 times. That means having four children and one will be SS is not true. And again, i know a family that had four children, three SS and one AS. Infact two is late now. One of them died of joint pains at age 29. The last one wit SCA, came back to Nigeria and refused to go back.
Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 7:35pm On Oct 31, 2012
Nonya: @ Abali1 and others who are SS

Research on a dietary supplement called Jobelyn. I have heard it is good for sickle cell anemia, among others. My mom, who was having serious knee and joint pain discovered it miraculously. Since she has been using it, no pains or complaints anymore.

I admire your positivity and drive to find a solution, not only for yourself, but also for the present and future generation. You are right, PITY IS NEVER THE ANSWER.

All is well and long life is yours in Jesus name. smiley

I used JOBELYN when I was still an undergraduate. I now use Cellod-S.
Re: The Facts And Myths Of Sickle Cell Disease by ACM10: 7:44pm On Oct 31, 2012
Abali1:

Please, if you have an advance knowledge of it you can share it with us. Am really interested in knowing all I can about the SCD. It may not seem of benefit now, but it maybe useful later. Thanks.
(I can put my email here, if you wouldn't want to share it with the public)
The advanced knowledge of the condition is mostly for academic purposes. Like I wrote earlier, it is of no benefit to you. You already know everything you need to know about the condition. You seems to have done your research thoroughly. In fact you know more than some doctors.
Another point which I would want you to know is that sickle cell trait(AS) confers some protection against malaria in the first five yrs of life. The protection against malaria is equal to that of a normal genotype after 5yrs. You are absolutely right! Sickle cell anaemia confers no protection against malaria. In fact, the immunity against plasmodium infection is diminished.

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Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 7:46pm On Oct 31, 2012
olu77emi: @Abali
Thanks for the 'hands-on experience' sharing, Do you have any information on this drug "Nicostan"; if you do how effective is it, also what is your suggestion for Children under 7yrs SS Management using the following drugs
1. Sunday-Sunday Medicine (Anti-Malaria Drug)
2. Folic Acid and

Thanks

I have never used Nicostan before.
For children under 7 yrs who are SS, please do all you can to keep close watch on them. You can get info about Cellod-S on the website we posted here. The number of the director is even on the site and you can call him and have a one-on-one chat with him.

Folic Acid is good. But there are other drugs that can go a long way to help a sickler.
Food stuffs like Fiofio (pigeon pea), beans, vegetables, fresh fruits(pawpaw, cucumber, garden egg), soymilk, soya beans, milk, yoghurt etc can also help that child.
Water, water and plenty of water.
Re: The Facts And Myths Of Sickle Cell Disease by toyboy1(m): 7:51pm On Oct 31, 2012
@abali1, if Makama hall, UNILAG, Pius, Femi, Dunstan n Toyin makes any sense to u, contact me,.... my email is on my profile.
Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 7:54pm On Oct 31, 2012
toy boy: @abali1, if Makama hall, UNILAG, Pius, Femi, Dunstan n Toyin makes any sense to u, contact me,.... my email is on my profile.

I was in UNILAG, but I did not reside in Makama. Good to know you were an Akokite.
Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 7:57pm On Oct 31, 2012
[quote author=ACM10]
The advanced knowledge of the condition is mostly for academic purposes. Like I wrote earlier, it is of no benefit to you.

Okay.
Re: The Facts And Myths Of Sickle Cell Disease by Gracious10: 8:04pm On Oct 31, 2012
Abali1:

I am against AS/AS couples marrying. I am only telling my story, because a lot of people are mis-informed about the kind of life SS people live. When most SS people get to marriageable age, the stigma against them begins. Forget that so many people are educated and "enlightened" but it is only very few people that are open minded, including people that should know better....THE DOCTORS.

If you were AA, would u date or marry an SS person having experienced the Challenges of of living with SCD? Be honest.

1 Like

Re: The Facts And Myths Of Sickle Cell Disease by ACM10: 8:09pm On Oct 31, 2012
Gracious10:

If you were AA, would u date or marry an SS person having experienced the Challenges of of living with SCD? Be honest.
grin grin grin
Your question is tricky. I must confess

2 Likes

Re: The Facts And Myths Of Sickle Cell Disease by jnrremedy(m): 8:10pm On Oct 31, 2012
Abali1:

Please, I have had this arguement with someone else on another thread. You can read my story in this thread, and I beg you do not mis-inform the public. Malaria attack if not handled well, will result to the death of a SCD person.
this is not misinformation let me explain
scd patient have some level of resistance against malaria. The reason why scd is prevalent in the black continent is due to malaria. Our body response to malaria parasaite epidemic over the years resulted to the development of scd(thats is why it is prevalent in subsaharan africa, asia nd some other countries(like d carribean) where malaria is epidemic )
malaria parasite(i.e plasmodium sp.) destroys red blood cells by feeding on heamoglobin in d cell. There is a stage in the life cycle of d parasite that involves d parasite living in the blood cells(sporozoites stage) without this stage d parasite will not be effective in infecting other cells. This is where ss/as genotype derive their resistance. Due to the deformed shape of their red blood cell(d sickel shape) their blood cells dont live long they re rapidly destroyed in d liver and spleen(d average life span of red blood cell is 90 days). The rapid destruction of sickel red blood cell means d parasite too in them will be destroyed without them reaching maturity stage to cause further damage. All this dont mean as/ss wont develop malaria (d imunity is not full some parasites can still circumvate dis defence) but this gives them some level of resistance agaisnt malaria attack when compared to d other genotype(aa)The reason why this resistance is not so well pronounced in scd pateint is cos of their fragile ability to withstand bacteria/parasite attack(remember this is not a full 100% resistance). But it is a liitle bit more pronounced in AS thats why they dont develop malaria easily. You should also no that AS too have sickel cell shaped red blood cell but not as much as SS genotype.
Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 8:13pm On Oct 31, 2012
Gracious10:

If you were AA, would u date or marry an SS person having experienced the Challenges of of living with SCD? Be honest.

To be honest I will marry anybody, be it AA, AS, SS. You know why, am open minded.
I am a christain and I would have married a Muslim, if she had not decided to move on. There was oposition from my Mum (being her only son). To make the matter worst, I AM IGBO.
And to be honest with you, that has been the best relationship I have had till date.
I couldn't act as a Man, because I was in still in school and I was still financially incapacitated.
Re: The Facts And Myths Of Sickle Cell Disease by Gracious10: 8:13pm On Oct 31, 2012
ACM10:
grin grin grin
Your question is tricky. I must confess

I know why I asked. I found myself at that point and yes, I didn't really know if I could carry on with the risk of dealing with this issue. So maybe someone who is SS can tell us if the tables were turned, would they marry someone in such situation having being through the hurdles and even continuous hurdles of this disease?

1 Like

Re: The Facts And Myths Of Sickle Cell Disease by Thawarplay(m): 8:16pm On Oct 31, 2012
Hmmm!

Im so confused. . . . TCM state it early that cellod-s can cus tumour nd other shid!

Plz what about jobelyn? Can i buy that too?

I cant avoid to go thru this pain again, not even concerned about the pain but d hospital bills

Im still young 21.
Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 8:18pm On Oct 31, 2012
Gracious10:

I know why I asked. I found myself at that point and yes, I didn't really know if I could carry on with the risk of dealing with this issue. So maybe someone who is SS can tell us if the tables were turned, would they marry someone in such situation having being through the hurdles and even continuous hurdles of this disease?

I believe I have answered your question. Am revealing a lot of Personal info in this thread and they are verifiable infos.
Have an Open Mind. Beautyful things are sometimes hidden in ugly places.

2 Likes

Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 8:23pm On Oct 31, 2012
Tha warplay: Hmmm!

Im so confused. . . . TCM state it early that cellod-s can cus tumour nd other shid!

Plz what about jobelyn? Can i buy that too?

I cant avoid to go thru this pain again, not even concerned about the pain but d hospital bills

Im still young 21.

My dear, what is TCM?
I don't know about tumour, but blink said he has been on Cellod-S for the past 10years. On my part, I started using it around July/August.
I will advice you to visit the website earlier stated by blink, and call the director on phone.

Am sorry about your pains. But have Faith and Trust in God, you will overcome. You are WARRIOR AND A SURVIVOR.
Re: The Facts And Myths Of Sickle Cell Disease by ACM10: 8:24pm On Oct 31, 2012
Gracious10:

I know why I asked. I found myself at that point and yes, I didn't really know if I could carry on with the risk of dealing with this issue. So maybe someone who is SS can tell us if the tables were turned, would they marry someone in such situation having being through the hurdles and even continuous hurdles of this disease?
I have to be frank with you. As a male with normal genotype, I can't marry a sickler. Sickler females are frought with mind-boggling obstetric complications.
But, if I'm a female with normal genotype; I can marry a sickler male. This is my personal decision and has nothing to do with stigmatization.

2 Likes

Re: The Facts And Myths Of Sickle Cell Disease by ACM10: 8:26pm On Oct 31, 2012
Abali1:

I believe I have answered your question. Am revealing a lot of Personal info in this thread and they are verifiable infos.
Have an Open Mind. Beautyful things are sometimes hidden in ugly places.
You are right and I respect your choice.
Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 8:31pm On Oct 31, 2012
ACM10:
I have to be frank with you. As a male with normal genotype, I can't marry a sickler. Sickler females are frought with mind-boggling obstetric complications.
But, if I'm a female with normal genotype; I can marry a sickler male. This is my personal decision and has nothing to do with stigmatization.

Thanks for being honest. The question she asked has been put to me several time, and I always answer it the same way.
Infact it has made me to tell any lady upfront, before I start dating her that if she knows that she can go forward it is better we don't start. But trust Naija gurls now... they will date you for awhile, then comes the interference from Family and friends. She will be so overwhelmed with advice that she starts seeing danger where there is none.

2 Likes

Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 8:35pm On Oct 31, 2012
jnrremedy:
this is not misinformation let me explain
scd patient have some level of resistance against malaria. The reason why scd is prevalent in the black continent is due to malaria. Our body response to malaria parasaite epidemic over the years resulted to the development of scd(thats is why it is prevalent in subsaharan africa, asia nd some other countries(like d carribean) where malaria is epidemic )
malaria parasite(i.e plasmodium sp.) destroys red blood cells by feeding on heamoglobin in d cell. There is a stage in the life cycle of d parasite that involves d parasite living in the blood cells(sporozoites stage) without this stage d parasite will not be effective in infecting other cells. This is where ss/as genotype derive their resistance. Due to the deformed shape of their red blood cell(d sickel shape) their blood cells dont live long they re rapidly destroyed in d liver and spleen(d average life span of red blood cell is 90 days). The rapid destruction of sickel red blood cell means d parasite too in them will be destroyed without them reaching maturity stage to cause further damage. All this dont mean as/ss wont develop malaria (d imunity is not full some parasites can still circumvate dis defence) but this gives them some level of resistance agaisnt malaria attack when compared to d other genotype(aa)The reason why this resistance is not so well pronounced in scd pateint is cos of their fragile ability to withstand bacteria/parasite attack(remember this is not a full 100% resistance). But it is a liitle bit more pronounced in AS thats why they dont develop malaria easily. You should also no that AS too have sickel cell shaped red blood cell but not as much as SS genotype.

I believe you mixing up things. It is even the heterozygous AS that has a resistant to malaria and not a homozygous SS OR AA. Thank you

2 Likes

Re: The Facts And Myths Of Sickle Cell Disease by Gracious10: 8:36pm On Oct 31, 2012
Abali1:

I believe I have answered your question. Am revealing a lot of Personal info in this thread and they are verifiable infos.
Have an Open Mind. Beatiful things are sometimes hidden in ugly places.

If na beautiful mind, I get am well. I once dated a guy living with this disease, it was even a blind date (a friend hooked us up) so I didn't even know what he looked like and he never gave any authentic details of himself. My mind was wide open till I got to the meet up place and saw one guy limping with a cane walking towards me. I recognised the face, yes I was shocked but being myself, I gave him a warm hug. He never disclosed this to me.So questions followed and he opened up. I loved him anyways, fought off friends who tried to ridicule him but I found out that he was a bitter person about this disease.( Guy was a very cute, intelligent man) am sure he thought I was gonna leave him like the others did. I stayed. He had 3 crisis in just one winter!!.(I don't pray even my enemies to have this disease) wish I could take his pain away. I cried more than him. His hip bone was just grating away, so much pain,Stayed with him till he got better. By Gods grace he survived that one. When he proposed, I didn't know if I wanted to deal with these crisis repeatedly even though I am AA, the fate of my children having to deal with As issues on who to marry hunted me. And his bitter part, I just didn't know how to deal with it.

It's also important that people with SCD get psychotherapy. Cos this kind of thing fit turn person mind like crazy.

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Re: The Facts And Myths Of Sickle Cell Disease by Amynamerica: 8:42pm On Oct 31, 2012
jnrremedy:
this is not misinformation let me explain
scd patient have some level of resistance against malaria. The reason why scd is prevalent in the black continent is due to malaria. Our body response to malaria parasaite epidemic over the years resulted to the development of scd(thats is why it is prevalent in subsaharan africa, asia nd some other countries(like d carribean) where malaria is epidemic )
malaria parasite(i.e plasmodium sp.) destroys red blood cells by feeding on heamoglobin in d cell. There is a stage in the life cycle of d parasite that involves d parasite living in the blood cells(sporozoites stage) without this stage d parasite will not be effective in infecting other cells. This is where ss/as genotype derive their resistance. Due to the deformed shape of their red blood cell(d sickel shape) their blood cells dont live long they re rapidly destroyed in d liver and spleen(d average life span of red blood cell is 90 days). The rapid destruction of sickel red blood cell means d parasite too in them will be destroyed without them reaching maturity stage to cause further damage. All this dont mean as/ss wont develop malaria (d imunity is not full some parasites can still circumvate dis defence) but this gives them some level of resistance agaisnt malaria attack when compared to d other genotype(aa)The reason why this resistance is not so well pronounced in scd pateint is cos of their fragile ability to withstand bacteria/parasite attack(remember this is not a full 100% resistance). But it is a liitle bit more pronounced in AS thats why they dont develop malaria easily. You should also no that AS too have sickel cell shaped red blood cell but not as much as SS genotype.


I beg to differ.

The reason why SCD sufferers are advised to avoid mosquito bites at all cost, is as a result of the fragile nature of their Red Blood Cells. The Red Blood Cell of a Sufferer lives for half the life span of a normal Red Blood Cell. That's is why its called Sickle Cell ANAEMIA (because they are always in need of fresh Red Blood Cells). When Malaria strikes, the Red Blood Cells get depleted even faster, causing a build-up in the Liver (as it tries to eliminate the dead cells) thereby causing the eyes to yellow. This (yellowing of the eyes) is usually taken as a sign of malaria in most sufferers.

This short life span of the Red Blood Cells of sufferer should not be qualified as an advantage. If malaria strikes the sufferer at a time when the blood levels are at a low, it could lead to death.

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Re: The Facts And Myths Of Sickle Cell Disease by Nobody: 8:44pm On Oct 31, 2012
debojyde:

Did u study Maths in primary or secondary school? Have u read what I wrote? Which is ur problem , understanding the concept of probability or understanding the English . PROBABILITY MEANS NOTHING IS GUARANTEED. THERE IS NO " ALWAYS " IN ANY SCENARIO REGARDING PROBABILITY. TO BETTER UNDERSTAND, REPLACE THE WORD PROBABILITY IN MY PREVIOUS STATEMENTS WITH THE WORD CHANCE.
accept your mistake in the last paragraph and move on.

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