₦airaland Forum

babysnogls: I do believe there's notin God cant do. I was AS and about to marry anoda AS but my dad put his feet down! My mum and i prayed 4 a change in my genotype. We prayd and believd and it changd! My dad stil dint believe. Took me to his own clinic and i stil was AA! I got married, av 2 kids, both AA! Just believe..

At the expense of sounding like a doubting thomas, I will say that you were always an AA, but your lab result came out as AS. I maybe wrong though (miracles still happen abi).
But, I have also had a lab test returned as AA. (This is not joke).

Idowuogbo: damn!!!!!!

I guess you now understand that I wasn't really being harsh on the lady on the other thread. If every SS person should come out and tell his or her story, am sure nobody will really see them as normal beings.
But the truth is that, we are all normal. When you wrestle with death and refuse to give up, you will find it frustrating when mere mortals tell you that sicklers can't do this or that.

I have to tell this story, because I know that many AS/AS intending spouses will not really appreciate what they are about entering. Also to tell the "DOUBTING THOMASES" that a sickler is a survivor and can withstand more painful things in Life than your average "healthy persons".

We tolorate a lot of bulls, just so that society will not use our conditions as an excuse.

Presently, I use Cellod-s to manage the SCD. I have also stopped taking all other medications. I now feed on nutricious food types. I have included fiofio (pigeon pea) on my diet. Vegetable soups are now my favourites (lols, just joking). I use fish in almost all my meals now. I take yogort and soy milk every now and then. For almost 18months now, I have not neared a hospital. Except visiting other people who are sick.
I make sure I take a lot of water. (I used that even when I was small, so no biggie).
Moreover am constantly on the net searching for remedies, that can help alleviate the SCD sufferings.

Above all my TRUST IN GOD IS UNSHAKEABLE. I believe the good work He has started in me will come fruition.

When I got to the University, I was already armed with enough info and experiences regarding SCA. I have also gotten to understand my system in a very unique way. ( Parents and Loved ones of SS persons, this is very necessary)
In my case, I can sense a crisis way before it actually becomes something else.
My school was very far away from my mum this time. So, I was left to my own vices.
With that arrogant sense that comes upon CHAMPIONS every now and then, I decided to test Fate in different ways. I took to drinking alchohol with my buddies and also took up smoking (these are very deadly habit for any sickler to indulge in).
Though I didn't forget taking my medications, but it wasn't as regular as it used to be.
In my year two, I had a totally different kind of crisis. This time around the pain was on my leg, precisely the soles of my feet. I was rushed home (it was during one of those times that police killed a student and I followed others to protest the killing by marching on the road, we were heading to Alausa).
My sister took me to a hospital and the doctors said I had tumours growing there, that my leg will be amputated. I cried and begged God not to allow me go through this one. The Doctors said I was going to wear a POP for a month, that if it doesn't improve then the leg will be amputated.
After loosening the POP at the end of the month, I was asked to walk around. I felt some pain, but I decided that I will rather live with the pain than allow anybody to cut off my leg. And at the end, my Faith and Trust in God triumphed.

God sustained me through my growing up years, NO DOUBT.
So what effort did my parents and the doctor (I had one doctor, though he is no longer in the country) take to make things right. My parents did not slack in reminding me about taking my medications. The Igbo phrase " i nou la ogwu gi" became an anthem to everyone in my compound.

I hate eating beans, unripe plantain, even fish while growing up. I hate vegetable soup, I hate drinking vegetable water or olugbu water( that is bitter leaf). But my didn't relent. If it means bribing me, she will do it. Also with the benefit of hindsight, I will say the FIOFIO I ate in school like 5 or more times a week really helped (even though I hated fiofio then).

Almost all the types of food that was necessary for me, I hated them then. But now, I have no choice than to feed on those nutricious food types I hated while growing up.

It was after this crisis, that I really knew that God is indeed a WISDOM.
Before the crisis, our promotional exam was fast approaching. And I really stressed myself reading (cos I wanted to impress my dad). You won't believe that I came back the weekend before the exam day, after staying in hospital for almost 2 or 3 weeks and I passed and got promoted.

So, when the man dropped me at my mum's office the woman just prepared and rushed me to the hospital. The same hospital I stated above. The doctor ran a couple of test and the result came back....MALARIA, TYPHOID AND PNEUMONIA.(i hope that is the spelling)
I don't know if it was the typoid, but after each blood transfusion my blood level will go up and before you know it has dried up again. This time around, my doctor was as confused as anyone. But, to God be the Glory I pulled through that one.

Fast forward to my secondary school days. I bless my dad wherever he may be ( he passed on in my final year in the secondary school).
My dad did not make me feel llike a sickler on bit. When I chose a boarding school, he did not object. Unlike my mum that wanted me to be where she can always have her eyes on me (women and fear ehh).
I went to a boarding school and mingled with other children, from diverse background. But by then I already know that I cannot do everything all the other children were doing. Even if I have to engage in a manual labour(especially cutting grass) I will always find a way to rest when am exhausted. Throught out my JS 1, know one really knew that I have SCA. But then in my JS 2 third term, I had another very bad crisis. This time around, one of the parents that came visiting unofficially( cos it wasn't our visiting day) had to take me home. But the man just dey fear say make I no go kpeme for him car, cos I slept through out the whole journey which lasted more than 2hours.

my dad being a practical man, knew that the same treatment may repeat itself. Started thinking of doctors he may know within the city. Finally, he remembered one that was his junior in high school. When we got to the hospital a 3 storey building I couldn't climb as I didn't have any energy left. My mum has to carry me on her back.

It was in that hospital that Haemoglobin syrup was recommended and a dosage of malaria preventive tablets every two weeks.(I have stopped taking these).

Some maybe wondering how a SS person manages the condition. I will use my experience in Life as a case study.
When I really got to appreciate the seriousness of the SCD was when I was about 8 or 9 years old.
I had this severe crisis that set my body on a High Fever. This type of Fever is better imagined. The heat from my body was such that when my mum places a wet towel on my forehead, the towel in no time will became warm. She will dip it back in the water and place back on my forehead. After about five minutes the water itself will become warm.
After watching me for the night, while praying that I survive the next day.... they (mum and dad) rushed me to a hospital the next day.
When we got to the first hospital the nurses on duty actually rejected me, as in they refused to admit me.... their reason is that there was no doctor on duty(it was on a sunday).

Idowuogbo: calm down! i understand your message but d poster chose to do it her way not ur way.Encourage her and stop picking faults on how she decides to deliver her message.

you are one person I secretly admire on NL. Believe, I have already calmed down.
Like I said in one of my post, She is a kindred spirit. I understand her message perfectly.

Techwriter: I don't know whether these are facts or myth but when I sought friends advice on whether to marry a fellow AS. One told me that the possibility of giving birth to a sickler is from my 3rd baby. That I can actually stop at two and be safe. I also heard in my teenage years that ones an SS gets to 30, the symptoms ceasing and he can't die from the condition. Is that true?

You first question, I will categorise as a myth. This is because determining the Genotype of any baby from an AS/AS partners fall under probability.(Doctors and medical scientist should correct me if am wrong)
Determining the genotype of a baby is akin to determining the sex of a baby. It could be the first or second child that will inherit the HB s gene.

The second question is equally a myth. Am above 30. But if I should be careless with my health now, I will only have myself to blame.

My dear if you are thinking of marrying an AS and you are equally AS, i will only advice that you shelve that plan. Why tempt FATE?

mrmayor: After reading your post, I have read and reread the original post, trying to see if indeed she's craving for attention as you alleged, I find nothing to support your line of thought. Her post is really referring to the numerous threads on people with AS genotype getting married and having children, the Pros & Cons. The OP, is only saying STOP, THINK BEFORE you have that SS baby because your beautiful Baby would go through what I have been through.I don't see what is Cry Baby about that.

I thought we have gone past this stage. Read my subsequent replies after the post you quoted.
Moreover I just opened a thread, about the FACTS and MYTHS of SCD.
I am not encouraging AS/AS to get married.

We need to keep this thread alive. Cos someone will open another thread tomorrow asking if to go ahead with AS/AS marriage. Or an AA will come on NL with a story seeking for advice whether to marry a SS or not, cos s/he heard that they can't have children or that they will die soon.

Also I will really like to gauge the opinion of readers about dating or marrying a SS person. Especially those that are AA OR Have siblings who are AA or friends who are AA.
Will you encourage the person to marry SS, If they love each other? Your honest opinion is needed.

@Ujujoan,
please read Tatiana009' post. Is that an imagination also.

[quote author=Ujujoan

There is NO stigma in SS as far as I know (except maybe the one you imagined) . . .[/quote]I will like to believe that it is my IIMAGINATION. But the truth is am living it and other SS people are living it or will live it. Trust me, you don't want me to tell you stories. Cos, everyone will be going eeyah.

It's good taliking or discussing with people like you who OPEN MINDED, even if it on NL.

My dear people of NL, am creating this thread because Genotype issues has affected and still affecting relationships.
I am not a medical doctor(wish I am one) and am not really science inclined, but I read a lot. Moreover the issue of SICKLE CELL DISEASE (SCD) is one dear to my heart.
As you all might have noticed, threads about genotype incompatibility is sprouting here and there on NL. And sometimes the opinion of people here on NL can't really be crazy. From the practical ones who see Life as experimental(that is, science proven or Doctors opinion) to the zealots who believe that religion is the be all and end all.
A know of some facts about SCD, being a suffer my self and I have also had of some myths concerning SCD. I will like others to add the fact and myth the also know or have heared of. Thank You.
FACTS:
SCD, is a blood disease. It is inherited from from the HB s genes of both parents.(so it's both parents that should share the blame game, if any)

SCD crisis occurs when you have a mutation of the red blood cells(the doctors and lab scientists should explain better).

Crisis is not always painful ,but it can also be extreemly painful (you wouldn't wish your enemies that can of pain)

Some, not all SCD persons have the yellowing of the eyes(probably due to jaundice) and they also have a kind of stunted growth(also not all SCD people)

SCD is MANAGEABLE. And DEFINITELY NOT a Terminal disease.

There is more risk of losing a SCD person when they are still children( because they yet to understand their body system and take adequate care of themselves)

With good nutrition and religiously adhering to their medications, SCD persons can live to an old age.( heard of woman who is her 80's and also know of my mum's friend who should be in her late 60's, if not early 70's).

MYTHS
SCD persons will die before or by their 15, or 18, or 21 or 27 or 30.

SCD persons cannot bear children( especially the males. A lie from the pit of Hell. My lecturer in school already had 3 children before I graduated)

SCD persons don't have malaria ( please no allow mosquitoes near anybody whey get SCD)

And a whole lot of other things. Please my good people of NL, this is not an exhaustive list. you can add your own. Thank you.

NOTE:
I am AGAINST AS/AS PARTNERS GOING INTO MARRIAGE. Do the right thing and let's all join hands and see that SCD stops with our generations.
Yes GOD IS ALIVE AND WE SHOULD TRUST HIM. BUT DO NOT GO ABOUT TEMPTING FATE.

Tlinkz: Thank you all for the feedback.
For those who think I came here to sell out my story, you have it all wrong, as I said before now, this story about the pains and argony occured years back. I was motivated to write this story because of the feedbacks I read on some threads here on nairaland.
I didn't come here to earn anyone's pity. I am a strong woman. Contrary to what someone said about me being a cry baby over this issue, the "crying in the closet" happened over 10 years ago, when I was much younger.

All through my life till this very day, I've not earned pity from anyone and I don't need it online either.
I ΑМ PROUD OF WHO I ΑМ, I'm proud to be me and no one else. I've being to many hospitals, seen many doctors and at each instance, the doctors argue right in front of me that I can't be suffering from the disorder because I'm way stronger than most AA people out there.
I'm a survivor and I'll continue to survive


This thread was only created for enlightenment and I hope it serves its purpose

Thank you

Am truely sorry if I come across as mean. We are a Kindred spirit.
All the best.

freecocoa: You are getting unnecessarily too emotional, you were stigmatized we know, stop making it look like that's what we are doing here, get over the issues already, ahn ahn .

My dear am not being emotional at all. The op, going by this story is by far younger than me and I bet you, she will get to the REAL STIGMA stage.
That is why it looks as if am against her story. She needs to start building a HUGE SELF ESTEEM, cos it will really help her go through this stage.

She needs to count all her blessings and weigh them against the "percieved" curses.

[quote author=freecocoa]Okay it is a sensitive topic for you I get it, she didn't come here to ask for pity, she wants people to know the risks involved with raising an SS child, where's the crime in that?

Am sorry if I come across as being mean to the op.
When it comes to the issue of AS/AS marriage, I always discourage the couples. Not beacause I don't believe that God will see them through, but Like you said prevention is better.

Above all, am just interested in letting people know that with modern medicine and constant research going on for the cure of SS, a SCD person can live a normal life.

At all those viewing this story, let me tell you one thing you all should remember.
IT IS FROM PITYING SS PEOPLE THAT THE STIGMA ARISES. Like they are lesser beings whom the gods have dealt with. Before you know it, conciously or uncousiously you will want to protect them "FOR THEIR OWN GOOD", but in truth you are just killing their self esteem.

freecocoa: Excuse me Mister, what really is your problem? she shouldn't share her story because? If you have a problem with someone trying to educate others on the dangers of ignoring issues that arise with genotypes, then that's your problem, stop trying to paint OP as a cry baby.....not cool.

My dear, the story is not really educative. The story is more about the TRAUMA OF SCD. If you want to be educated about SS disease, you should be Learning about how the sufferers manage SCD.
What in the op's story signifies how she is managing it. Is it the pains she is Having? is the numerous visits to the hospital?
Freecocoa, what is eduacative in this story?

@ITSMODELLA,
I am not here to attack the op, but to help all SS people anywhere they might be.
The world tends to judge people based on Colour, race, And now GENOTYPE. It is wrong. But you can't change the world, but you can change your view of the world.
I graduated and went for job aptitude tests. I will pass and be called for interviews, only for all my efforts to end there cos am a SS. Not because I wasn't qualified.
Today, do I regret missing out some of thos opportunities. NO. cos I have moved on and am grateful to God, who is empowering me financially.
I will always shout it from the roof top... SS PEOPLE ARE WARRIORS AND SURVIVIORS, WE DON'T REALLY NEED YOUR PITY. ALL WE ASK THAT YOU JUDGE US BY OUR MERITS.

ItsModella: My brother makes that decision not me. I expect him to know what is good for him. But to answer your question, yes. Using the punnett square, it is very (I mean highly) unlikely that they'll have a SS child. All their children will be have the AS genotype.

Good answer on NL. About having SS child, it is not possible genetically. All children will be AS.
In real life parents and family, will object their children marrying SS people.( I have had the experience in the past).
Not all parents though. But, if I were to rate it on a scale of 1-10. I will say 9, will not agree forget level of eduacation.
So again, good answer cos you are in the 1% of people who will not judge others based on SCD.

apocalypse: I doubt this story is hers but a means to gain support for her own choice. With the advancement in medicine and science as a whole , ending your relationship with your other half based on genotype is no issue , come on information is everywhere - use it.
There are some people you can't live without

On the contrary, I believe it's her story. But she is still struggling with how she is being percieved by society. Hence this story.

[quote author=tony_m1]VERY TOUCHING BUT I DO UNDERSTAND HOW YOU FEEL AND THERE IS NO POINT ASKING GOD WHY YOU.

AM AN SS THAT USED TO HAVE CRISIS NEARLY EVERY 6 MONTHS AND SPENT MOST OF MY TIME IN AND OUT OF HOSPITAL, PEOPLE USED TO FEEL SORRY FOR ME AND EVEN MY SIBLINGS, I USED TO QUESTION GOD ALSO. BUT ONE DAY I WENT TO AN HOSPITAL 15 YEARS AGO AND PRAYED TO GOD THAT MY TIME WILL NOT BE SPENT IN THIS HOSPITAL AGAIN AND THAT WAS THE LAST CRISIS I HAD.

I AM ON CONSTANT MEDICATION USING PENICILLIN AND FOLIC ACID, I DO HAVE PAINS SOMETIMES. IT'S BETTER TO LOOK AFTER YOURSELF AND HAVE MEDICAL CHECK UPS ALL TIME.

I PRAY THAT GOD WILL HEAL AND TOUCH YOU, ITS HARD AT TIMES BUT GOD IS MY STRENGTH . [/quote]This is what am talking about. keep that spirit brother. YOU ARE A WARRIOR & A SURVIVOR.

rodeo0070: @ Poster. Keep your head up. I know my God will not let you down. You will be surprised that "Impossible is nothing"...

Nothing dey happen. Keep your head up.
God almighty is in control...

Thank you for this. @op,
IMPOSSIBLE IS JUST AN OPINION.
AM A WARRIOR.

ItsModella: Either ways, she has gained our attentions and educated us. What matters is not the OP's intentions but the message she eventually passes across.

Yes, she gained your attention. But when she falls in "LOVE" with your AA brother, will you allow them to marry. Or will you tell your brother that there are other "HEALTHY" people out there?

Tlinkz: Thank you all for your positive feedback and prayers. A day in my life has always being like a nightmare, but now that I'm older and more matured to handle the situation, I feel happier and proud of myself and all I've achieved in life against all odds.

Thank you all once again, this really means a lot to me

You are proud about all you've achieved in life against all odds, yet you go ahead to tell pity/ cry baby story.
People will really pity your story and when it comes to measuring you against your abilty as a person, they will still go ahead to use SCD as a barrier for stopping you from giving you your due.
I have been there before.

blink182: Poster, I empathise with you. Please I'm begging you, if you are in Nigeria please get Cellod-S. If not for that drug i'll be dead and forgotten.

At the peak of being a sufferer, these were my symptoms

Enlarged liver
Enlarged spleen
Protruding stomach
Protruding dentition
Pale skin colour
Weekly blood transfusion
Aching bones and joints
Skin ulcer
Always weak
Stunted growth
Constant fever
Thin limbs
Avascular necrosis of my left femoral head, this is the symptom that shows today as before I could get someone who could really treat it, my femoral head got deformed. I need arthroplasty to correct it, that is one procedure I refuse to do.

Yeah, my tummy is now flat, muscles everywhere, 6ft tall-my parents are and you can only imagine the embarrassment when my younger sister of 6 years became bigger than me. All that is in the past now, my protruding dentition is now a minor over bite.

My dear get that drug and start living and stop existing. The things I can do now ehn, all the missed sex, smooching, dating, drinking, my dear I even started smoking everything then stopped sha, its not my type of thing.

I can go on and on, I bath cold water, drink it, go cycling, even body building.

If at all, the only thing good about being a SCD sufferer is being brilliant. Not average brilliant, I mean fire for fire. I'm the dullest sufferer I know but the average person dare not challenge me to intellectual prowess.

blink, op maybe craving for pity attention and not to educate people about SCD.

Op, touching story. As I guessed NL people are already saying awww; what a touching story etc and all other funny pity phrases.
You have gained their attention. But, you said you don't look it, apart from the colour of your eyes people won't really know.
Let me ask you; do you really crave the pity attention from people or you genuinely want to educate people about SCD?
Aside SCD, do you think you have a bright future? You said you are in school, do you wish to use your education to better yourself? Or are you just in school, because your parents can pay for it?
Do you wish to Love and be Loved, as a person?
Do you wish to earn respect and not DEMAND respect, cos you suffer from SCD?

Answers to these questions and more will enlighten you on who you are.
YOU ARE A WARRIOR AND WARRIORS DON'T SEEK PITY. THEY CRAVE TO ACHIEVE GOALS AND EARN RESPECT AND ADMIRATION FROM ALL AND SUNDRY.

I equally have SCD. am out

ghettodreamz: The picture you painted above with your comment makes it sound like one of my friends, maybe it's just a coincidence, anyway..... Toyota Avalon looks great though.

Yeah, maybe coincidence.

I drive a Toyota Avalon. But, I don't know if it's me or the car, cos I am very small in size compared to the car. When I step out of the car, wearing just casuals people tend to stare. I used to be shy, before but I have gotten used to it now.