ameenahz:

Thank your for you response.
I believe that some people will feel squirmish about question number 7 & 8.
You don't need to feel like that, the survey is very important and may enlighten or help someone out there to make up his or her mind.
There are several people who are in a relationship with SS people, but who will most likely back off when it gets to marriage talk. The AA partner is not backing off because S/He does not love the person, but because of the negativity that family and friends feed to him / her.
If the awareness of Sickle Cell is not spread and made popular like that of Cancer and HIV/AIDS, the stigma and sterotyping that most adult SS witness will never stop.

baby_123:

Go to LUTH and get tested again.

baby_123, you asked at the beginning of this thread if the questionnaire was necessary, I hope Oluplus' case have shed more light on why the questionnaire is necessary.

oluplus: Abali, you' re doin a great job, but pls help me. I got married 4 yrs ago. I didn't do genotype test bcux I did it in pre medical before I got employed and the lab attendant showed me the result on friendship level, though, am not suppose to see it and I tested AA. My wife did the test before wedding and also tested AA. Now, my wife is 25 weeks preg and the doc did her genotype again during one of her visits and the result showed AS. I was confused, and decided to do mine again. To my suprise, I tested AS. Am yet to understand what is goin on. We have a boy of 3 yrs and I decided to do his own too. But thank God he tested AA. Now, my fear is abt the unborn child. What exactly is goin on? What can I do? Am just disturbed.

Oluplus, I know you must have been disturbed when you found out that you and wifey are both AS. All hope is not lost.
Infact, your type of story abound in this our country Nigeria. Many road side labs or private labs don't really have some of the medical equipment required to do a thorough blood genotype screening. If I had not known mine since I was a kid, I would have fallen victim to this type of thing. I was once tested and my result came back as AA, LOL. (My sister even claimed that if my Faith had been strong, the MIRACLE would have been permanent).

Ok, Oluplus, take your wife to any teaching hospital and do another Genotype testing to be double sure (thank God your first issue scaled through).
After that, I would equally advice that they do a Genotype test to determine that of the baby in the womb (I had the procedure is a bit costly). But if you would not do that of the baby in the womb, then have faith that it comes out as AA or AS.
Oluplus, even if the worst case scenerio happens and it comes out as SS, all hope is not lost. Immediately after birth, the doctors should be able to flush out the jaundice, to help prevent the Yellowing of the eyes that may come about as the baby grows. And you her or his parents should give the baby the baby the special care that is needed.
Medical science have gone so far, that if the required care is given a SS child will live his/her life happily and productively even till old age.
Oluplus, don't despair, your Faith will go along way if things do not pan out the way you planned.

Thank you.

258 views.

217 Views.
I thought by now, I would have gotten more responses. Or does the survey set of some emotinal sparks.
NL family section, I need your views/opinion on this thread.

Goodmorning all, I'm still waiting for more people to take the survey.
Thank You

aniffy4eva: I agree with Abali1 on this one. In my opinion, the awareness on SCD is pretty low, considering level of illiteracy in Nigeria. Moreover, a lot of people who think they know, don't know as much (yours truly included).... We learn everyday...

Thank you for responding. To be sincere I am amazed that you are married to a SS. I think you will have to share your experience (but not on this thread) with NL soon.
I will like to know how you got through all the opposition that am sure you must have faced when you where considering getting hitched with a SS. But not now.

Thank you.

@winneygirl, would you mind responding to the Questionnaire.

Please I need more response to the questionnaire.

Winneygirl: It pains me to hear adults say they don't know their genotype. I didnt, but I'm glad I do now. I wouldn't have known I am AS.But I am somehow alarmed that there are so many AS genotype people out there. I have learnt to ask appropriately before stepping into any relationship. Saves a lot of headaches/heartaches.

Winneygirl, you will be shocked at the number of adults who don't know their Genotype. Even some of my cousins don't know their genotype.
The awareness is there, but it is still very low.

baby_123, thank you for your response. I believe that having associated with people having Sickle Cell have really helped you to grasp somethings about the disease.
I will say you are well informed.
Thank You.

111 views,
Am still waiting for more people to comment or respond to the questionnaire.

please I will like more people to take the survey.

biolabee:

Please can you elucidate us
I hear the child birth process can be physically exhausting
In a poor medical world like our country here, what can be done

Yes for the woman, it can be exhausting. But that does not mean that with proper care she can give birth to a healthy child and still come out alive.
Since the woman will surely loose a lot blood giving birth, it is only comon sense that the doctors should be ready to transfuse blood as at when needed.
Moreover, I believe that the couples can opt for Ceasarian section.
Thank you.

baby_123: Is this questionnaire necessary? I think dealing with the disease is enough. You don't need people's bias written out for you to even get more down about. Ah! Life is for the living o. You are already dealing with enough. And positivity goes a long way for a healthy and long life.

Baby, the questionnaire is necessary. I have gone beyond looking at things subjectively.

For instance the two people who have responded to the questionnaire seems to have the uncommon belief that as AA they might actually father a SS child by marrying SS.
That is where educating the populace about genotype pairing comes in.
Hope you will help out with the questionnnaire.
Thank you.

[quote author=touchmeder][/quote]

I am impressed about how you answered the questions. Again, if you are AA, THERE IS NO WAY YOU CAN HAVE A SS CHILD.

Thank you.

biolabee: quote author=Abali1]
 
Biola,
I believe that for some reason(s) which I don't know, you find this thread offensive.
Being born rich or poor is not a permanent status in life and my thread is not about oppressing anybody.
Equally being born in the Namid desert is not a permanent thing also.
 
If for any reason you don't like this thread and it's making you to respond emotionally, you can click unfollow. Thank you.
 
Dude now you are being emotional
Because I was born a sickler should i live my live in fear
You achieve what you can given your physcal limitations
When your time comes, you leave with peace and transquility that u achieved your tasks in life
 
I dont know you so i can only relate to you based on what you post here, hence my first question what was your point
Conversely you don't know me

On the survey questionnaire, you are making a basic flaw in your assumption that I an reacting to hear say

I am AA yes but why would I risk my marital life by marrying an SS who may not survive the rigour of childbirth. That to me is common sense

I may marry an AS but that's where it stops for me

Please can you calm down. I already apologised.
Your number 8 response, gives me the opinion that you don't really know as much as you claim to know about SS.
There is no way you can marry a SS and have a SS kid. It is simply not possible.

About having fear that your spouse may die young, is another reason why am having this survey. The awareness of SS is still very low and most of those that claim to know much about SS, don't really know as much as they claim.
Thank you.

biolabee:

1/2.I dont know if they did, but i am AA so i guess i am lucky
3. I dont know whether to class it as terminal cos adults manage it even to the 40s and 50s but its something i wont wish on my enemy
4. someone with SS MUST marry AA if they even survive to that age. For a woman the stress of child brearin is even another issue
5. Yes it can be managed but i hear some days can be terrible
6. Na God do answer that one
7. NO
8. Nothing more cogent that i cant leave it to chance or FAITH of having a child with SS with attendant heart painm , finance issues etc
9, Yes, as far as i know, it does not affect the gonads
10.With God on her side and good medical advice
11.No
12. n/a

Good luck on your exercise and appreciate your passion for this project to increase awareness

Thank you for taking time to reply. But I find your number 8 response funny.

You are AA, there is no way that you can have a SS child. Also, I gather from your responses that your answers are mainly based on Hear-say and not being aware of what Sickle Cell Diesease actually means.

All the same thank you. I equally apologise if I sounded put off in my remark above.

If others can answer, it will go a long way in helping my research into this and also gauge how much people know about the SCD.

biolabee:


Ok conversely the rich should not oppress the poor as it is matter of opportunity.

If I was born in the Namib desert I would be a Bushmen lookin for the coca cola bottle

Its not about your lot in life but what you did with your time in life

Biola,
I believe that for some reason(s) which I don't know, you find this thread offensive.
Being born rich or poor is not a permanent status in life and my thread is not about oppressing anybody.
Equally being born in the Namid desert is not a permanent thing also.

If for any reason you don't like this thread and it's making you to respond emotionally, you can click unfollow. Thank you.

This thread is born out of the desire to get people's opinion concerning those of us living with SS. Below is a draft questionnaire I intend distributing to people, in the course of researching Sickle Cell Disease (SCD).

QUESTIONNAIRE:

1) Did your parents do genotype testing before they got married?

2) If not, do you consider yourself 'lucky' to have escaped being born a SS?

3) Would you categorise Sickle Cell as a terminal illness alongside Cancer or HIV/AIDS?

4) With you knowledge of Sickle Cell disease, which genotype pairing do you think is the most compatible for someone with sickle cell to marry?

5) Do you think that with the right education and awareness of Sickle Cell disease, that someone living with Sickle cell can live a long, healthy and productive life?

6) In your estimation, how long do you think that a SS person can live? In other words what is the expected Life expectancy?
7) Can you marry someone living with Sickle Cell?

If NO, what are your reasons? (Please state a cogent/tenable reason)

9) Do you think a SS male can father a child?

10) Do think a SS female can carry a pregnancy to term?

11) Have you ever been in close association with a SS person?

12) If yes, do you consider them different from other people having AA or AS?

feminine A: My parents didn't know anything about gynotype but thank God they were both AA. Bringing it down to this present day where gynotype awareness is everywhere, if anyone decides to stil go ahead and marry against the result then they should both be ready to face the music.

Assuming you are still single, do you think you can marry a SS (since that is the only compatible genotype for a SS)?
If Not, please can you give your reason(s)?

baby_123: It wasn't random on my end. My mum was a qualified health professional before marriage and they got married earlier than the 80's or 90's. She screened my dad in everyway. . But I know what you are saying.

Thank you. At least you understand where am coming from.

More replies please, and no bashing of the op. Thank you.

biolabee: No one has replied so far cause no one understands your thread

Are you hastling those who are AA(that they are lucky pple) or are you trying to improve awareness (there is enough of that already)

Our parents may have not know about genotype matching but WE KNOW AND IT IS ADVISED YOU CHECK YOUR GENOTYPE COMPATIBILITY BEFORE YOU MARRY TO AVERT UNNECESSARY MARITAL ISSUES
NO BE BY FAITH
NA COMMON SENSE

Ish

my dear, I am not hassling those with AA genotype. I am sorry to tell you that Awareness of SCD is still very poor. Even the so called educated people and some medical doctors still go about stigmatising people with SS.
Online, it may seem as if awareness about SS has been created. But in real life you find people who speak ignorantly about SCD.

The purpose of this thread is to get people aware that being an AA or AS does not make them better than someone who is SS. Yes it may seem as if SS people have more challenges, especially as kids and teenagers because they are yet to come to grasp about the peculiar health challenges.
But adult SS who understands their body rarely do have health challenges. But still the stigma stiil trails both the child who suffers SCD and the adult living with SS.

18 views and no reply. Does it mean that I am the only one who have thought about the randomness of AA, AS, and SS on this forum. NL, I know you people can do better than that.
MODs, this thread seek to enlighten people, you maybe surprised that it will draw the same amount of traffic if not more than those celebrity thread that normally makes front page.

Abali1: I will like to ask a question and I need a matured answer from Nairalanders.

For those who are AA (or AS) and born in the 80s or 90s;

1) Do you know you could have been born with the Sickle Cell Disease?

Because most our parents that wedded in the 80s and early 90s did not go for genotype testing. It was purely based on Love or other factors.

I think I will go first. My parents got married in the 70s and I am their last child. Though my father was educated (earning a masters degree in Geophysics) he never thought of going for a Genotype testing before he married his childhood sweet heart. Also my mum is equally educated, with a degree in Linguistics and also a degree in education.

Now the question I have often asked myself (but cannot ask my mum, my dad is late) is how did two educated people not consider genotype testing. At least it should have occured to dad since he studied outside the country and he is in love with science often claiming that he would have gone medicine if not that he hated the sight of blood.
After much musings, I came to the conclusion that many people, in my dads time did not consider genotype testing when tying the knot.
it then brings me to question number two, what makes you who is AA or AS think that at the throw of a dice you would not have ended up being a SS? Because so many people then were not really aware of the dangers of SCD.

Moderators, I will like to lobby that this thread gets to the Front Page.
Awareness and knowledge about the Sickle Cell Disease will go a long way to help so many Africans.
Remember this disease is mainly seen with people of African origin and Nigeria happens to be the most populous African Nation.
You don't need to be squirmish about this topic, the way Cancer and have HIV have gained awareness (both of which I consider terminal illness), is the way I want to spend my energy and time creating awareness for Sickle Cell, which I consider not to be a terminal illness. With the right education about sickle cell disease, many SS will live a long and healthy life.
Thank You.

I will like to ask a question and I need a matured answer from Nairalanders.

For those who are AA (or AS) and born in the 80s or 90s;

1) Do you know you could have been born with the Sickle Cell Disease?

Because most our parents that wedded in the 80s and early 90s did not go for genotype testing. It was purely based on Love or other factors.

2) Given the above question, what do you think is the probability of you being born with either the trait (that is AS) or being born with SS.
In other words how many of you have parents who are both AA couples or who did genotype testing?

Please I need matured answers, before I move on to the actual talk about being married to a person living with Sickle cell anaemia.

I want to be remembered as the one who lived and educated/enlightened other people about SCD and why those that live with it should be loved and not pitied, and given a chance to prove themselves worthy.

THIS MIGHT BE THE LAST TIME, THAT WE MIGHT MEET AGGAIN, TODAY WE LIVE, TOMORROW WE DIE, WHAT IS THE MEANING OF LIFE?

Today it is Goldie, who is it going to be tomorrow? Live in peace with all men.


RIP Goldie.

Being born with a blood genetic disorder and having failed, but great relationship as a result of that. Though the feeling is very supressed.

Dad was a junior in the same school with mum's uncle. Then he used to visit mum's uncle at home during the hols, from there he took a liking to mum. But mum's father opposed their union initially, though their love was stronger than any opposition.
Dad did a bit of Introduction and travelled out for further studies, mum waited for him for 7 years. And he came back and did the honourable thing and took his bride. They were together and loved each other till death parted them.
Mum is still Alive and cherishes the memories of her hubby.