Abali1: 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? NO

2) If not, do you consider yourself 'lucky' to have escaped being born a SS? LUCKY? Maybe... I'm AA

3) Would you categorise Sickle Cell as a terminal illness alongside Cancer or HIV/AIDS? Terminal is a strong word.. i'll go with HIGH-RISK

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? AA

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? YES..Education is important.... Sound finances can also be helpful

6) In your estimation, how long do you think that a SS person can live? In other words what is the expected Life expectancy? Life is in God's hands... Average life expectancy in Nigeria is 47 .. i know of perfectly normal healthy people who died way before 20
7) Can you marry someone living with Sickle Cell? YES. In fact... i am...

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

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

10) Do think a SS female can carry a pregnancy to term? YES. We have a son... Very cute i should add.

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

12) If yes, do you consider them different from other people having AA or AS? NO

One more question... 13) If you had to live all over, would you marry her? YES.. a million lifetimes more

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...

Abali1:
Thank you for responding

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: 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.

baby_123:

Go to LUTH and get tested again.

ameenahz:

Abali1:

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.

ameenahz:

Sincerely, i undastand. I said it in my rsponse that my sista has SCD. She s just 14 n i know how i will feel if she is jilted by a lover who is scared (of the same thng i am scared of). But at d same time, i knw what we all, especially our mum go thru (emotionally and all) wheneva she has a crisis. Ko easy at all! I praise the men and women who are married to men/women with SCD and i see them as strong, tough pple, but believe me, i dnt av d strength it takes to cope, hence my response. That does not mean i will discourage anyone, even my own brother, who is willing to marry sum1 wt SCD.

baby_123:

Go to LUTH and get tested again.

Abali1:

biolabee:

You better be praying it does not make front page yet

oluplus: . Thanks. I stay in Kaduna, so I'll go to a general hospital and do it again. @Abali, I read abt CVS test online, it determines the gntyp of unborn babies. But it's best done at 11th or 12th week. But now, it's almost 26th week now. I spoke wt the coy secretary and I think the cost i around 200K which is still affordable. A doctor friend said we should forget it as we can't do anything abt the result at dis stage.

biolabee: Front page will help with your cause but also the rif rafs and derailers will camp In


But no problem

Abali1:

please don't get me wrong, my reply was directed at you in particular. I am talking generally from the experience I have had and those of other SS I have heard about.
Of course there are challenges associated with SS, but most adult SS people rarely have crisis. In fact I know of people who have gone for upwards of 2years and more, without being hospitalize.
As an adult SS, you are more awarzs things that will trigger off a crisis.
My concern is mainly about getting those that are not SS, to stop sterotyping and stigmatizing SS people. If you know yoeu will not be able to live with an SS person,hy go into a relationship with that person in the first place?

Parents, Siblings and friends out there should be able to feel free to talk about Sickle Cell and let their loved ones know where they stand in the scheme of things. It help reduce some of the heart breaks.

Aqva: it seems like op wants to whip up sentements for pple living.with ss. Too bad parents were ignorant back then. It's a pity for pple to suffer for ignorance sake.
As per ur question, I knw someone who is ss, but says if he was aa he wouldn't marry an ss. It's a personal choice and no.one.shld be made to feel.guilty for his or her answers.
As for me I can.marry an ss. I will marry anybdy with any condition as long as I love her.

Abali1: 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?

Olu-Emma & Ass.:
This genotype stuff is a big issue.