One day one of my thread will get the attention of someone higher up, and something positive may come out it.
Am happy to be associated with NL, since 2008.

@Unicorn22,
We don't call ourselves Warriors because we want to boast or feel important. But we call ourselves Warriors, because after all the Trials and Tribulations we come out smiling.
Sometimes those that Jilted you because you are SS will see you in the future, say 5 0r 6 years down the line, and they get shocked because you are still standing and even doing better than the last time the saw you.
The topic of this thread is MARRIAGE AND THE SICKLE CELL DISEASE. I purposely chose it, because I want to pass across a message to people out there. Of course it takes more than Love to go into a marriage relationship with a SS. IT TAKES HEALTHY DOSE OF FAITH and being able to look beyond the physical.
I have had relationships were the girl tells me that "I am everything she ever wanted in a man......BUT", once it gets to that "but" I smile and tell her...."I understand". Then I move on. It is not easy, but I know that I am more of an assets than a liability to that BOLD AND COURAGEOUS LADY who will stand by myside and be counted.

amarush: Smh at all this misdiagnosis. Same thing with my husband, two tests in Nigeria both results AA. Husband was tested in the UK at the insistance of the hospital after I got pregnant and I tested AS. Husband result came back AS. Anyway we have to beautiful children, first born AA, second AS. Both pregnancies opted to have CVS, a procedure where a needle is inserted through your stomach to extract amniotic fluid to test for SS in the babies. 2 week wait for the results, the longest two weeks of my life.

This thread is all about sharing experiences, gaining knowledge about SCD, creating awareness and I can now add letting the public know that it is not enough to visit just any laboratory for the purpose of Genotype testing.
Please, ensure that you at least get yourself tested once in a Teaching Hospital or a Lab that sometimes send their samples to the teaching hospital for testing.
The future of your unborn child is very important, do your best to protect it.

palmasglobal:
my dear, lets it not pain you, anyone can be a victim after the test, in which i am one, before my wedding we went for this genotype test, i did mine at eco-scan and my wife to be then who is now my wife did hers at ecwa medical center, we were compatable and recommended to be wedded in which we did, we had our fisrt issue, and second issue as well, but the second issue was always fallen sick, when we went for genotype test on her we were told she is SS, can it be possible? we now have to do another test on her we were told she is an AA, we went i and my wife to do another test we found out another different genotype compare to our first test, we went to another lab we now have different result again compare to the 2, pls in this situation who do i blame, i have 2 different genotype result, in this case what do i do and which should i beleive. pls advice. thank u.

My dear, do yourself and family a favour and go to A Teaching Hospital to conduct and genotype test. Most road side Laboratories do not have the equipment to differentiate differences in Genetic Make up...

If it turns out that ur child is SS, please do her a favour by keeping yourself updated in the treatment and management of SS person.
Thank You.

3215 views,
guys we need more responces. Don't shy away from the topic.

uhuns: 1. guys pls stop quoting long post.

2. I will advise all to go for a min of 4 test at different times and places.

3.I have two different families with ss Kids age 10 and 6.they just got to know last yr and this yr. and they all claim to know their genotype prior to marriage.
5. or maybe a dna should suffice.

moral of the above is in item 2.

In addition to what you said above, I will advice that people should have themselves tested at least once in a teaching hospital. PLEASE IT IS NECESSARY.

Ladapo:
it turned out to be "AD" ...even doctors here are confused about it but they said we could have a child with SD which is like SS...remember my wife is AS and now I am AD. It is my hope that I don't have anymore kids in order not to get into the possibilities and now, I have to lecture my daughters ( 1st girl is 3 and 2nd is less than 1) on the need to get married to AA genotype husbands cause they re already classified as AD.

My questions are:
1. Has anyone heard about AD before?
2. You really have to be sure of your genotype before marriage...please, please and please, though I did mine twice before leaving Nigeria.
3. Can someone lecture us all on the different types available?

I have heard of AC, cos my family doctor was the first to diagnose me as SC. Most private Lab I have had my test in, always return the result as SS. But after the AA incident above, my blood sample was sent to a Teaching Hospital and it came back as SC.
I believe SD, SC, Sickle Beta etc are all milder forms of Sickle Cell Disease.
It's good that you have started educating your daughters.

queen binte o: @ OP - come to facebook let's chat. All will be well ma guy

Binte I just saw this. But am going there right away.

NL, you guys are so funny. But take easy with GEJ, abeg naw.

opeoluwa2: Well for me,I'm lucky not to be an SS because my parents never had the genotype test before marriage.Fortunately for me I am AA.

Being SS is not a crime but our society look down on them as weak and unhealthy.They are always fragile with yellowish eyeball and staunted growth.

A lot of awareness still has to be done,just last week a family friend complained on how he ignorantly married his sweetheart who is AS and he too happens to be AS.The lady got pregnant before marriage and there was no time for bloodtest.After delivery they started noticing some abnormalities in the baby's health.
The doctor told them to do a blood test and both of them were AS.we are yet to ascertain the baby's genotype but both parent were praying the baby shouldn't be SS.

I was angry when I found out,but I don't blame them because samething happened to me.I never asked my husband about his genotype until we were way too deep into the relationship,lucky for us we are AA.

So many people are into relationship that is way too deep even after they comfirm their genotype,they always try to attack it with faith.believing their children will be free from SCD not minding their own status.

No child deserves to suffer,
SCD challenges can be avoided.

It's so unfortunate that a lot of wo/men of my generation still gambles with the future of their kids.



To be honest with you, I have sometimes entertained the thought of staying single for life. But I really don't think it's wise, because am an only son. Looking at my aged mum, I often feel a pang of pain knowing how much she wants me to settle down. Moreover, people who know me from afar think I like playing around with women too much that I don't even feel the urgency to settle down.

eahk: Well funny thing is having SCD is not a death sentence. I'm a Doctor married to an SS ( one of the most beautiful woman in the world ) and I never knew she was cos we were friends for a long time until when we got serious and she came out to tell and it never changed a thing. And its funny when I hear people look at those with SCD as walking corpse..gosh that's so wrong, we need to change our mindset.
They can live as long as any healthy person with adequate care and more importantly love and support.
And with her use of Hydroxyureas she's been almost crisis free..except for very extreme exhaustion from work which we all experience.
Trust me even someone who's AA without love and support will die prematurely.
I must add she's not just beautiful, she's very healthy and takes care of me the AA dude!
And if I tell you where she works your jaw will drop considering she's SS and she's top of the notch!
And you can not over-emphasize the importance of getting to know your genotype, its life-saving.
And please cos someone is SS shouldn't be a reason to stigmatize them..like someone said its not an infection its a condition.

WoW. I believe someone out there will read this thread and reconsider his or her plan of dumping that SS.
Thank You Doc.

deobaba:

My dear, am sorry to hear about the Love you lost. But please stay focused on your marriage.
I can't begin to recount the disappointment I have faced in reltionship because of this genotype issue. To make matters worse, some of my ex will want to keep the communication channel open even after getting married to someone else.
But trust me, I never allow that to happen. I always say to myself "You are married, please stay married. I am not going to be a reason for distraction in your marriage".

sanb: You're welcome and I’m also learning a lot here as well. Thank you for opening this thread. It'll be nice to see others respond as well too. keep it up....Mind me asking if your research is for an MSc or PhD project?

The research is not for academic purposes. I have a passion for SCD, just unfortunated that I am not science inclined.
But I will use the data gathered, to help create more awareness.

sanb:

Thank You for taking time out to respond.

malipalina:
TNX 4 D ENLIGHTENMENT

You are welcome, but I will appreciate it if more people will take the survey.
Thank You.

ameenahz:


Sir, that is too big a risk to take o! Do u av any SCD patient around u? Have u actually seen any of them during crisis before? Then u'll agree wt me that love is a small sacrifice to make when it comes to the issue of genotype.

My own mother has 3 AS's n one SS.

It is tru that u don't start a relationship based on genotype and u cannot ask 4 a gal's genotype d day u meet.

My dear, from your previous post you stated that your sister is 14years old. If you have gone through my other thread on SCD, you will see where I stated it clearly that the most trying times for a SS is when the person is still very young.
I can tell you for free that when your younger sister hits adulthood 21 and above, the crisis will start subsiding.
Why? Because by then she can sense the onset of a crisis before it finally comes, and if she is sensitive to her health she will take appropriate measures to prevent the crisis or minimize it.
Thank you.

jaidopor:

Someone that allow others to make life decision for them during courtship will definitely invite relative ( and society) into his or her marriage latter on.
This is what i usually tell people. If you have never been in the same situation, then u cant advice me. Reason been that u will not know how i will feel or what will happen if i take the decision you are advising me on.

I can see you are an optimistic person, keep it up.
But what I said about family & friends influencing people during courtship is as Real as Real can be.
Thank you bro.

lola.luv:
Knowledge about this condition is still very low...

You can say that again. The most painful aspect is that some of us living with SCD are so shy of stigmatization that we normally shy away from discussing the topic.
I AM A NORMAL HEALTHY BEING, WHY SHOULD I BE ASHAMED OF DISCUSSING SOMETHING THAT WASN'T MY FAULT IN ANY WAY.

nwaka1:


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? THEY CAN LIVE A LONG AND HEALTHY LIFE WITH GOD BY THEIR SIDE.


7) Can you marry someone living with Sickle Cell? YES, I AM MARRIED TO ONE MYSELF. THANK GOD HE HARDLY FALLS SICK.

9) Do you think a SS male can father a child? YES I GOT PREGNANT THOUGH I MISCARRIED

10) Do think a SS female can carry a pregnancy to term? IT MIGHT BE COMPLICATED, BUT I HAVE A SISTER INLAW WHO IS MARRIED AND LONGING TO HAVE BABIES

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

12) If yes, do you consider them different from other people having AA or AS?
THEY ARE DIFFERENT IN A VERY POSITIVE WAY, THEY ARE VERY SMART AND INTELLIGENT AND THEY USUALLY DO WELL IN EVERYTHING THEY PUT THEIR MINDS INTO. APART FROM THAT, THEY ARE JUST LIKE EVERY OTHER HUMAN BENGS. Hope these will help ur research.

Thank you Nwaka1. But I find your response to question number 5 a bit funny. Yes with God all things are possible, but we should equally strive hard to educate ourselves in things that concern us.

With a good knowledge of Sickle Cell and a good Dose of Faith, there is nothing that a SS won't achieve. And Yes, we are highly intelligent beings.

mujiboy: Am with U bro,the thing is we are scared of death @ the long run, do pple without SCD doesn't die at tender age.

Many people don't look at things from that angle. What you will likely hear is that "it is better to marry someone whom you know is healthy, than getting married to someone who may suddenly die tomorrow".

Natural that is the way humans think. It has always been like that;
Poor vs Rich
White vs Black
Tall vs Short
Igbo vs Yoruba vs Hausa, and so on.
It's a vicious cycle out there.

jaidopor: A question for everybody,

Do you start a relationship based on genotype? Imagine meeting a girl and the first question you ask her is her genotype?


Life is all about risk. The man or the woman that you rejected based on genotype might be the person that will bring happiness into your life and you achieving your aim in life.

I am AA but genotype is not a determining factor for me when i want to get married. I am a risk taker.

Thank you. I like your opening question.
Having experienced so many reltionship break ups myself based on genotype, I think the best option is just to open up to a potential partner in the first few weeks before things get heated up. But am sorry to say that even after opening up to some people and they agree to date you irrespective of genotype, when you people must have gone far along, you see parents, siblings, and friends discouraging the person.
In my case, it wasn't as if the girls do not like me, but family pressure always make them to bow out of the relationship.

So this thread is about, letting Parents, Siblings, Friends and well wishers to make their position known early on in the life of their "healthy" AA kids about going into a relationship with a SS person.
It's all about enlightment.
Thank you, for responding.

Thanks MODs. I appreciate.

thanks itsModella.

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

Yeah, it's a big stuff for some people (SS, AS) and for some other people they don't really give a hoot.

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.

I wouldn't call it "whipping up sentiments". But I guess everyone sees things from his/her own perspective.
Thank you.

[quote author=ameenahz][/quote]

*My reply was not directed at you in particular* correction made.

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


But no problem

I understand how NL works. But if Front Page can help get more people informed, I wouldn't mind the 'rif rafs' and derailers.
This is a path I have choosen, I will do everything in my will to see that more and more people get enlightened about these beautiful and amazing people known as SICKLE CELL WARIORS.

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.

Oluplus, let's have Faith that your baby will be born AA/AS.
Even if the worst case scenerio happens which is SS, you are better armed with information to handle the future.
Like I said above, Sickle Cell is not a death sentence. For one, I am a living witness who believes that you can achieve whatever you set your mind to do, Sickle Cell or not.

biolabee:

You better be praying it does not make front page yet

Why? to me this is to get an objective view of things concerning Sickle Cell and also to get a sample opinion of people.

Moreover it helps the SS people among us to prepare our minds, and also will help those AA/AS to see how people view SS people.

Sickle Cell is not a Death Sentence so I don't see why I/we should get all emotional and teary eyes about the way other people see SCD.

.

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.

please don't get me wrong, my reply was not 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 aware of 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 you will not be able to live with an SS person, why 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 can help reduce some of the heart breaks.