EMERITUS1: pls is it true that ss gals should get pregnant early

I don't really understand the question or what you aree suggesting.
can you rephrase or the question.

blink182: You sent me a message, I tried replying but mail delivery kept failing permanently.

you can use abiaaba4@gmail.com
Someone may need you to explain one or two things about Cellod-s.
I will await your mail.

10) People Living with SCD are fragile beings and they should be shielded at all cost.:
Yeah, I understand how difficult it is for parents and siblings and other loved ones of Warriors. But I don't think we are actually need to be protected at all cost.
If it were only up to my mum, I would have spent all my life at Aba, Abia State. Kai! That woman is so over-protective of her only son. When it was time for me to go to secondary school, I actually sat for four entrance exams. I passed three and narrowly missed the cut off point for FG school. This means that I have three schools to choose from.
My mum insisted that I must go to Ngwa High School, where she can "watch over me and monitor my health" (that was her exact words). But my dad (God bless his soul) asked me to make my own choice. I chose a Catholic Missionary School far from Aba. As expected mum kicked as against it, but my dad told her that I have made my choice and he will respect it. Moreover that I was going to meet other children from diverse background.
God proving His authority over my life, showed my mum that He is the one with the Keys of My life. That He is the final authority over who lives or dies.
Today, I encourage parents of Warriors to do the best they can for their children. But don't try to live his/her life for him/her. Let them move around and mingle with the society, and find their own niche in the society. Warriors are stronger than many people think.

passionate88: No b pain crisis, I hear say when d pikin small, e get like 35% chance to stay alive bt when e dn pass like say 21 yrs, e get 79% to live..

As an adult, a warrior has a better understanding of what s/he is going through and can manage his/her health better.

nbright: What about the "story" we hear that a female SS find it hard to conceive..

This is a fallacy.

9) People living with Sickle Cell Cannot hold down jobs.:
For employers out there reading this piece, this is not true. Please give us a chance to prove ourselves before you put us down as people who will always absent from their duty posts.
I can say this because I have experienced this first hand.
Twice I took bank aptitude tests in two different banks. I scaled through the aptitude test level. But when it got to the face-to-face interview I wasn't shortlisted.
When the first one happened, I thought it was a mistake or because for one reason or the other I ddn't merit the position. But the second interview confirmed my fears. We were interviewed in a group of four. When it was my groups turn, they asked us to debate (I can still remember the topic, EFCC and it's duties, pros and cons) I did so well with my analysis and the points I marshalled out that others outside the interview room actually started clapping and the interviewers were beaming with smiles.
But when we were called in individually, they asked me general questions about my academics then one woman in the team asked me, "are you a sickler?" I knew she must have seen certain tale-tale signs, so I confirmed her question. There and then she started "preaching" to me about how stressful banking job is.... bla bla.... until the other team members called her to order.
Need I say that it marked the end of my pursuit of working in the bank. But I thank God today, that His Grace has been sufficient.
NB.:
Why then did I work hard acquiring knowledge if I cannot use it or apply the skills I have learnt? Answers, anyone.

zenith7: You're 100% right. On all of the above. Really don't know what else to add cause you've said it all.

Please you can add more to the list, because mine is not an exhaustive list of misconceptions. Warriors' experiences may be similar but at the same time there is always some differences.

People living with sickle cell are lazy:.
I beg to differ with this misconception. But some people have persisted in this misconception (including my elder sister). Sometimes, you hear her say "kai! this boy you are very lazy, you don't like helping out with house chores".
We may not be physically built like others, but we detest staying idle and lazying about (I can speak for myself and other warriors I have interacted with). What do you even consider as being lazy?
* I went to a boarding school and I participated in virtually all the manual labours. (I hardly used my health as an excuse). I fetch my own water, I wash my own clothes, I did most of these things on my own. Yet, she will expect me to come back for holidays and continue the toil. Why then is she my elder sis....LoL
*For those who finished from UNILAG, you will attest that someone who walks from Main Gate to Arts virtually everyday is not a lazy person.
*Also will you call someone who participated in all the Man-O-War activities, including endurance trek a lazy person? (NYSC days).
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The only thing is that I know my limit and try not to push it...
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When it comes to using our mental strength, Warriors have been known to thrive and excel above most of their contemporaries. It is not boasting, it's just the reality.

ohaleoghene: So touching ! I sure can only imagine what you warriors go through. To learn isn't bad anyway. Most of us believe that the only way one get to be a sicker is when both parents are AS , or one is AS , the other SS , or both SS . Is this a misconception , is there any other possible ways that could bring forth scickle cell ? Will like to know . When I was in secondary sch , my biology teacher taught me that sickle cell dnt get malaria . How wrong !

You are right with your analysis of how people can get the sickle cell disease. Sickle cell is not a communicable disease and can only be passed on through the gene of each parent.
Thus, a child born with sickle cell have parents (both) who are either AS/AS; AS/SS; AS/AC, AC/AC, SS/SS.
It is therefore the fault of BOTH parents.

7) The Calm before the storm.:
From the term above, you will understand that I am talking about that confusion you have as a parent/care-giver of sickle cell person that looks completely healthy, very active, and suddenly relapses into crisis.
You hear things like, "ahh ahh! But this child has been playing all day with his friends; s/he even perticipated in the end of year school activity in their school and danced with other children"; "but s/he has not heard crisis for sometime now, I didn't take it serious when s/he complained about feeling a little feverish" and other such comments.
Mummy, daddy, uncle and aunty, please the time that child needs to be carefully watched over is when s/he is hyper-active.
Believe me exhaustion or even dehydration can lead to sudden and unexpected attack. If you doubt this, ask any survivor/warrior to tell you their childhood experiences. Also remember that your child, like any other child, will always want to do what others are doing.
NB.
I am not asking you to choke him/her to death with care/ or to cage him/her. But be watchful when they are at play. By now most people who have been around people living with Sickle cell should know that most of us are naturally very stubborn, and cannot easily be caged.

Stylaay: To address the injustice of the civil war. The nigerian government should be sued in an international court to force them to pay back every citizen of the biafra, monies they criminally stole from them. How do you confisticate monies of innocent victims of a war? They forced my grandfather to premature death. A man that had worked so hard and had over 15million pounds before the war was given just 20pounds by the rogue gowan govt after the war. Nansense

Ehm ehh! sorry is your Grand Father by any chance Louis Ojukwu?
@OP,
Gowon is indirectly indicting his Government. He is calling for a probe of his administration. I would prefer that Gowon writes a book, telling Nigerians what actually went wrong with Aburi Accord and why he reneged on it.
I really want to understand why an agreement taking in Ghana will be reneged on getting back to Nigeria. It reminds me of June 12 Annulment and IBB's silence.

6) People living with SCD are immune to malaria attack.:
I really don't know if this should be here. But for the purpose of enlightening those that still think Sickle Cell people don't have malaria.
Please be adviced that malaria attack is among the top killers of children and adults who are living with sickle cell disease. I have argued here on NL with some really bright and intelligent individuals who think that because they read it somewhere and because I am not in the medical field, I shouldn't try to mislead the public.
Again, MALARIA IS A KILLER FOR PERSON's LIVING WITH SCD.

^^^ at last I can name two persons who have successfully managed this disease. One is an African American (70years or more), the other is a Nigerian (60years or more).
The African American is Judy Gray Johnson; Author of Living With Sickle Cell Disease: The Struggle to Survive.
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The Nigerian is my mum's friend Iheanyi Amuta; Author of Sickle Cell Disease: The Life and Testimony of a Sickler.
*****************************************
There are many others who are successfully managing this disease and equally pursuing their life's dreams and aspirations. So if you are a parent, sibling or relation out there or you happen to be in a relationship with a warrior brother or sister, you don't need to be afraid or give up hope on them. All you need to do is to show them love and care, and also to challenge them to attain/achieve their lives aspirations and goals.

5) There is no cure for Sickle Cell Disease.:
There is a cure for sickle Cell disease and that is the Bone Marrow Transplant.
The Bone marrow transplant is the only known cure for sickle cell disease. Though the difficulty in this, is that you have to find a matching donor and that could be placed in a probability of 1 in 1000. But it is sometimes easier to search for a match in one's siblings. That is the sibling of a Sickle cell person may have th same bonee marrow type.
Apart from the bone marrow transplant, sickle cell is a disease that can be well managed and the person living with it can have a normal and fulfilled life. All it takes is for the person, to avoid the factors that normally trigger off crisis. (Maybe I will create a topic on the factors that easily trigger off crisis in my next thred).
Those who have successfully managed this disease have been known to live well past their 60th birthday and above.
NB.
Bone marrow transplant has a number of difficulties; one, being to find a match and a *willing donor*; two, the cost of a transplant is very expensive, above what many people can afford, and transplant is not 100% accurate.
Therefore, managing the SCD still remains a better option.

4) Sickle Cell Affects only Black people..:
I used to have this misconception, but not anymore. Sickle Cell is not a black man's disease. Agreed, majority of people living with sickle cell disease are people of African descent. But there are a number of other nationalities that have people living with sickle cell disease. These includes, the carribeans, Brazillians, Asians, Greeks etc. So, I will advice that we correct the notion that Sickle Cell disease is the Black-man's disease.

3) Those Living with Sickle Cell Disease are junkies often using their health as an excuse to get a fix.:
This is one of the most annoying misconception about Warriors, and most times it is the Doctors and other healthcare givers that make this conclusions.
For our warrior brothers and sisters in the West, I can only empathise with you. I have read a lot of literature, where a person living with sickle cell disease visits the ER of a hospital only to be viewed as a "Junkie". Ahh ahh. How cruel can people be.
For some of you reading, when painful crisis comes it is better imagined than experienced. I don't know how to explain it, but I will use my experience as an example.
I once had a crisis that was so painful that I couldn't sit, I couldn't stand, I couldn't lie down. Any position I take, It will be as if someone is passing electric current through my body. At a point, I told my cousin to stand on my back. This guy weighs more than me, but I was willing for him to stand on my back to see if the pain can reduce (how foolish ba?)
When we finally made it to a neighbourhood hospital, the nurses asked me how the pain was. All I could utter was, "it feels as if I am pregnant and about to have a baby"....LOL. (do I even know how pregnant women feel, SMH)
Please, doctors in the house much respect. But we sometimes need to take a heavy dose of pain killers or even narcotic related med, just to make the pain to go away. It doesn't make us addicted to these pain meds or dependent on them. If you observe very well, we don't really have a need for them after the crisis.

2)The Misconception about doctors and other healthcare knowing exactly what a person living with SCD is going through in a crisis situation.:
This is one misconception that I hope will one day be corrected. My dear readers, if you are not a person living with SCD you can only imagine what warriors go through. But do not assume that you understand it because you are a doctor, a nurse, a pharmacist, a lab scientist etc.
Agreed, doctors and other healthcare givers are professionals who have spent years qualifying for their professions. But unless the doctor is also a Warrior, I don't think s/he will know exactly what warriors are going through. But out of respect for their qualifications, I hope to Trust them enough to imagine what Sickle Cell Patients go through.
I will prefer to hear a doctor/ nurse say, " I can only imagine what you are going through", or "I understand your pains". But please don't tell me, "I know exactly how you feel". With all due respect Mr. Doctor "you don't know how I feel". You don't know "the indiscribable pain racking through my body".

There are certain misconceptions about Sickle Cell Disease and people living with Sickle Cell Disease. These misconception should not be mistaken for the myths about SCD. I will try as much as possible to list and eexplain some of them.

1) The Age Misconception.:.
Many people are of the view that when you get to a certain age as a person living with Sickle Cell, you will stop having pain crisis.
Dear readers, this is not true. Most of us that have lived with this disease and are adults, have learned how to manage ourselves and avoid factors that may trigger off crisis. Also we have learned how to endure and maybe ignore the pain that goes through our bodies often. Because of this, people think that at a certain age in a Warriors life he will automatically outgrow crisis.
It is even unfortunate that some of us warriors have erroneously believed this concept of age, that they neglect their health and, am sorry to say, have paid with their life. Sometimes, you hear of a Warrior who has just finished School(University) and s/he is looking for work or already working and the next thing you hear is that s/he just dropped dead.
Please if you are a health care provider, parents, siblings, relations, friends and well wishers of a person living with sickle cell show them love by often asking them about the state of their health in a loving tone. Believe me, some of us often tend to forget that we have health challenges and just carry on as if "nothing dey happen".

lepasharon:

ok....but do you loose weight when you go into crisis?

I wouldn't know much about that, but I believe that most people lose some weight when they are sick.
But depending on how serious and how long the crisis lasts.

PointB: Perhaps when Ameachi travels to any those four states, the people there will return the favour.
Ameachi can end all these - simply by joining Anger & Pain Contraption (APC) .

Oga ohh! Nairaland see arguement.

Sincere 9gerian:
What was the police supposed to do? Kill all the protesters? Didn't people protest against removal of fuel subsidy for several days? This is democracy. Both the pro- and anti-Amaechi groups have the right to protest and even throw stones. The much the police can do is restrain the protesters to certain areas, which they did in this instance because the four governors and Amaechi moved to and fro the govt house. The police cannot stop people from throwing stones.

Moreover, governors are not the president that needs maximum security. Even the president with his maximum security was once a victim of stone throwing protesters.

I have been trying to figure out were we have met..... I now remember with some nostalgia that Oga Beaf never really left Nairaland.
Oga Beaf, you should understand that style of writting and grammatical constructions are like signatures they hardly change.

lepasharon: There are issues with gaining weight with ss ..anyone have any advice.thats the main thing that worries me about this disease

Do you mean that people living with sickle cell don't gain weight?
Actually, some of us are very slim. But I have also heard of others who are really big. Even on this thread, one of us said she is even having problems controlling her weight.
My advice is that you eat healthy foods (a lot of vegtables, proteins and fruits) and also rest well when you should.
Sometimes I attribute my slim built to my restless nature. I hardly stay in place, but when I force myself to rest and feed well I always do add a little flesh.

Madam CC,
Once again I say thank you. Finally, I have received the hearing aid and it is working perfectly. With time the volume will be regulated, by then my hearing system would have mastered it.
@Cannonnaire, my cousin came in yesterday and I collected this morning.
@Nairaland Team, I am greateful to Seun for creating this forum, I have benefitted from it in ways I didn't think possible.
God Bless Nigeria.

^^^ yes your little Warrior Prince can take. But like you said consult your doctor (don't be surprised if he discourages you, mine also did).
Also, try and visit the website of the producers of Cellod-s and probably call the director to get more info on how to administer the required dosages.
If you wouldn't mind, you can also visit and like our page on Facebook...
Naija Sickle Cell Warriors.

dominique: May God bless you and yours madam CC. I pray more Nigerians can be like you.
@Abali and canonnier, hope the hearing aids are working well?

Am based in the east, but my cousin will bring mine this week, God willing. I know it will work.

cannonnier:

Bless u. Have u recieve the aid yet.

I hope to get it at the end of this week.

chaircover: Pastor Abali

did you see my email?

Not yet, I will check it now.
(seen and replied)

so NCC is going to punish MTN subscribers by raising the Tarrif?
Instead of protecting customers interests, they are rather punishing customers thinking it is MTN they are regulating.

jamp:

Revelation 12

please give me a complete reference and stop sending me on a wild goose chase....
Revelation 12. Which verse or verses? if possible quote it here it here, it's not that hard.

Arcard: from deeper life to catholic

It is bashing of churches era on NL.
I think these attack is coming because there has been a lot uproar about how flamboyant pastors conduct there lives. If you are a keen observer, you see a pattern forming here.
I can predict that we will witness a deluge of attack to some of the Churches that still keep traditions seen as rigid.

softy:

BUT GOD rewarded her faithfulness before she died and after she died.

please can you provide a biblical reference to the above?

I wonder who brought this topic to the Front page. A topic that started in March/May......
Ok at topic,
Be adviced that Catholics Honour Mary and Mary is not the Focal point of Catholisicm.
If you all believe that Mary is the Handmaid of the Lord, through whom our Lord Jesus Christ came to the world (And the Word was made Flesh, and it dwelt among us), why then do you consider it a wrong act to HONOUR the very vessel God Used.
Honour is a deep form of Respect. If you do not agree with that, why not just skip it. No one is forcing you.
But going about criticizing those who do it is actually wrong. The Bible said "Judge not, so that ye may not be Judged". it goes on, "the measure/scale you used in judging others will also be used in Judging you".