₦airaland Forum

Idowuogbo: Loool..u no dey look mirror ke? Come on! U have to fight dat issue o! Remember u special.

My mirrow na my babes dem eye. That one na original, no be hand made.

[quote author=deco_slim]I have seen people living healthily with the SCD...

The way some of u talk is as dough the person won't leave long...

That's a big lie joor...

And please do anyone know of how to stop the yellowish of eyes for this special powers some people got (SCD)[/quote]I don't know how to stop the yellowing of the eye, but I notice that when I take excess water my urine is normally clear and people don't comment on me having "yellow fever". It's not as I carry mirrow arround. Infact, I no dey look mirrow.

Idowuogbo: Pls share wiv us nau...I've read from the warriors, I'll luv to read from d gladiator. Oya madam! If you not comfortable narrating it all, I'll deal wiv the little u promise to share.

@abail!
Morning.... Still reading, wow! U made front page? Go boi! Get em! Stop dose block heads(AS).

Am still loyal ma. Goodmorning and welcome to November.

queen binte o: Yeah, the recklessness comes wt the disease. I can't even share wat I av done as a babe living wt SCD. I cudnt av survived if not for God. God's mercy.
Advise,stop living reckless life *phew*

The recklessness for me, comes when someone tells me... "you can't do this". It will only make me the more eager to try it, if only to prove the person wrong. But everything get limit.

queen binte o: Yeah, the recklessness comes wt the disease. I can't even share wat I av done as a babe living wt SCD. I cudnt av survived if not for God. God's mercy.
Advise,stop living reckless life *phew*

The recklessness for me, comes when someone tells me... "you can't do this". It will only make me the more eager to try it.

@ Stronger, good to see you on this thread. Welcome aboard mate.

Tittos: This is what the doctor said..having a child with ss genotype is on an average of one in three kids..that doesn't mean it will be your third.It could come as your first or second but an average of one in three kids.

Please I beg of you, if you are AS and you your patner is AS. don't sign that dotted line. But if you insist and happens to have a SS, it beholds on you and not your DOCTOR to learn everything you can on SCD.
As people have already mentioned here, some doctors are well informed to manage a SS while others are as ignorant as ever.

queen binte o: @Abali1 - your story is not as interesting as mine.

Please can you share with us. We are to tell the world, the WARRIOR's story. And thanks for that suggestion "people living with SCD". Let's keep it real.

[quote author=Mich-rach]My question here is, should we go on with the AS and AS marriages and ignore the fact that there is about 25% risk of giving birth to a sickle cell child because abali1 (no offence please) is living a normal life or we should make use of the advantage we have (advancement in technology) and prevent it[/quote]If there is anything I will like this thread to achieve it will be the eradication of SCD or cutting it down drastically in my generation. AS/AS marriage should be discouraged.
I know that True Love still exists, I am a firm believer in having FAITH that GOD will see you through any problem. But is it right that because we know that we can call on God in times of trouble, we then decide to go about TEMPTING FATE?

Why go through the emotional trauma of Aborting a foetus?
Why strain your Finances seeking for a solution to an Avoidable problem?

I will keep on encouraging fellow WARRIORS and SURVIVORS, while at the same time discouraging those who want to TEMPT FATE (i.e. AS/AS intending couples).

Fetus: plzz i really want 2 meet u...i want us 2 talk abt my youngest sister whom is a victim nd shez jst 11yrs..i dnt want 2 loose her;i luv her...kindly, drop ur number or any useful identity here 4 me,,,urgent replay plzzz

Like someone already wrote, read through the Thread. If you still need to contact me, I will drop my email here.
I must warn, I am not in the medical field. All what I wrote are from experiences and the different literature i read on SCD.

Gracious10: Yes, a nam asu asusu anyi ofuma.

good to know.

crisycent: My sister and her husband are both AS. After the birth of their first child, it took 5 years before they had the second. This is not because she couldn't get pregnant but because whenever she's pregnant, they test the genotype of the baby in her womb and if it is SS, they abort. But thank God that they finally had to healthy AA male twin babies.

I suggest that if you truly love your AS partner, marry her but make sure you check the genotype of the baby in your wife's womb before you create problem for yourself. Sickle cell is not something anyone can cope with and you just can't help but feel sorry for people with this disease. In 2010, I lost a friend to sickle cell disease and I saw him literarily waste to death....Oghenekaro Brown Ifony....R.I.P

Yeah your sister may put up a brave face for the world. But if she is honest with herself, those aborted foetuses are eating her up emotionally.
It is only TRUE LOVE and the GRACE OF GOD that can keep couples who have gone through what you sister and the husband has.

AS/AS please don't do it, if you are not sure that in 20/25 years time you will look back and say YES, I took the right decision.

Gracious10: God bless your heart for still loving that lady despite the odds.
Dalu.

I bu onye b' anyi?

ACM10: There are stages involved in drug trial. Drugs are not shipped to the market in a hurry. The drug must be shown to be efficacious and safe for human consumption. So the drugs must pass through those stages.
If the drug alleviates your condition and causes cancer after some years; you will be the first person to race to court with litigation against the pharmaceutical company.
So relax! ..Don't rush it. It's for your own good.

The point am trying to make is that the Modern medical practitioners should put in more than lip service, to make sure these drugs by their herbal counter parts passes through the necessary stages.

Even though these drugs have not passed through laboratory/clinical testings, we the users have been spreading the word. WHY? Because we feel the immediate positive effect, while praying that it does not have adverse effect in the future. It is a wrong approach towards medication. But we don't have donkey years to wait for the othordox practioners, who will be administering FOLIC ACID AND VITAMIN A, B, C etc

Oga, I perfectly understand your concern.

blink182: honestly, I see people in the medical field as inexperienced when it comes to dealing with Scd. I've had the thought once or twice to go back to school to study medicine and be a sickle cell specialist. Knowledge in the field is too shallow. Sometimes doctors with private hospitals try not to admit patients in crisis. Its really pathetic. I hate it when you are in crisis and the Dr says 'give him folic acid'.

Everyday I keep thanking God for cellod s, if not for that drug I'm sure I will be dead by now, dying a painful death as family and friends watch helplessly.

A saying goes thus, "If you want to hide something from a Black Man, put/write it in a book.

We have doctors in Naija. Instead of the to research on how to effectively combact one of the known diseases "exclusively" to the black race, Africa in particular. Them dey do follow-follow for HIV/AIDS research, CANCER research (don't get me wrong, researches in this area are necessary).

Okay ooh... leave the herbal practictioners to find a curative or an effective medicine for the SCD, Mba. DIOSCOVITE was not allowed to be sold openly in pharmacies. Now Cellod-S is not being allowed to sell openly in the pharmacies.

Abeg na Naija Doctor discover FOLIC ACID ni.

ACM10: Sickle cell trait(AS) confers some level of immunity to malaria in children between the ages of 1 to 5yrs!

The immunity is lost after 5yrs!

There is no evidence that sickle cell anaemia(SS) confers any form of immunity to malaria. In fact they suffers from malaria frequently and are prone to severe form of malaria. Anti-malarial drug is one of their routine drugs in addition to folic acid.

Pls let's not miseducate the casual observers!

Abeg help me tell the EDUCATED SCIENTISTS.

FKBZ: Hello house,
I was forced to sign into NL today because of this topic,normally am just a guest who come to read and go.
I am an SC patient but not differnt from the SS,the crisis is something else, I cry my hearts out whenever the pains come.
I have checked the website you guys prescribed and I would be ordering the drug.
It not easy been a ss paient but with GOD faithfulness I have been able to overcome the pain but luckily for me most of my pains last max of 1week,I hardly go to the hospitals cos the doctors r just theives who give you the same drug at ridculous prices,and I have noticed any time am in crisis no matter the drug I take, its wen d pain decides to go down that it does.
But I have a question pls wat do u guys use to curb pains wen dey come,I have pains in differnt parts of my body sometyms my ass(lol)I heard abt someone who experiences pain in her vigna sometyms.but the worst is the back pain cos there is no how I can rub it to reduce the pain(lol).Don't mind me I love massaging my body wen the pain come just to reduce it.
Also does the disease affect a female monthly period,because I feel it does cos my monthly tinz come but in very little bits(I hope u guys understand)lol...
Let me rest here and await your comment.

My dear as an SC, yours suppose to be very mild compared to others. I know this because I was told by my doctor (the one that left the country) that I am SC. But, some of the subsequent lab results have been very confusing. From SC, to SS, and evn AA (lol). To play safe, I just stick to SS.

Try Cellod-S, I believe you will see a change. Goodluck.

Amynamerica: "In the latter
study the HbS carrier state was found to be
negatively associated with all potentially lethal
forms of P.falciparum malaria, whereas the
negative associations of the carrier states of HbC
and α-thalassemia were limited to cerebral
malaria and severe anemia, respectively. These
findings strongly suggest that, under conditions of
intense P.falciparum transmission, young sickle-
cell heterozygotes (AS) survive better than those
with normal hemoglobin (AA), whereas sickle-cell
homozygotes (SS) survive least well of all three
genotypes." Culled from Wikipedia en.m.wikipedia.org/wiki/Genetic_resistance_to_malaria

Thank you.

bright007: @poster:the theory that people with sickle cell anaemia are not susceptible to malaria is a fact.
The causative organism of malaria "plasmodium" cant parasitize the red blood cells of people with SCA because the red blood cells are sickle shaped.So pls get your facts right before feeding it to us.

My dear we can argue on this back and forth without getting to a compromise.
I have said it here and elsewhere, NO SICKLER SHOULD EXPOSE HIM/HERSELF TO MALARIA THINKING THEY ARE RESISTANT TO IT. YOU WILL ONLY HAVE YOURSELF TO BLAME.
EXPERIENCE STILL REMAINS THE OLDEST AND BEST TEACHER.

oluplus: I love this thread. Just don't know why it's coming now. I just lost a female friend (33) last saturday after a very terrible crisis. May her soul rest in peace. God bless you guys.

May her soul rest in peace.

Gracious10: 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.

Thanks for sharing. The SCD is not suppose to make a sufferer bitter, if he understands him/herself. Positive thinking can help anybody. I am blessed with a beautiful mind.

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

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.

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.

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.

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.

[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.

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.

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.

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.

I used JOBELYN when I was still an undergraduate. I now use Cellod-S.

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)

[quote author=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.[/quote]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.