Abali1:

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?

Abali1: 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.

Abali1: @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.

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 .

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

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

pinky85: Eeeyah !, @ OP

I know EXACTLY what you mean.
Your teens and 20s are some of the toughest times you'll have but you'll get to a stage where you can manage yourself better.

I also had the yallow I issue. Maybe now that I know what to do these days its not so pronounced and sometimes my eyes are totally fine.

The trick is to know your limitations. When we are younger we want to do what all our mates are doing. The truth is you'd soon get yourself into trouble if you continue.

After loads of personal research and studying myself I can say am so much more healthy than I used to be in my 20s. Only thing is a slight limp which I didn't get from avascular necrosis but from an unintended injury a Nurse inflicted on me 10 years ago in a hospital !

I weigh 75kg , which is just right for my height. I used to be so skinny. Now I'm fighting to stay trim. Don't worry the trick is to make it to your 30s and after that strive to get into your 40s and so on..
Don't give up !

Abali1: 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.

@ the bold quote;

i remember they were taken to the Evil forest during the olden days, said the gods struck them lol

@ poster, your story is quite touchy but i have loads of SS friends and they seem ok to me, is there something they are doing that you are not?

Tlinkz: Nlanders, I’ve been visiting this forum as a guest for quite some months now, and during my visit I came across some thread about Genotype and Marriage, or how a relationship ended due to genotype issues. After reading some of the comments on these threads mentioned above, I was stunned at some people’s mentality about the Sickle Cell Disorder(SCD) which can only be inherited from Hb AS parents. Some people think it is worth taking the risk, but trust me, it isn’t worth it. Having personally lived with Sickle Cell Disorder for over twenty years decided to share with you[b] “SOME MOMENT IN THE LIFE OF SOMEONE LIVING WITH SICKLE CELL”[/b] I hope after reading this, you’ll be able to have a clearer perception on why Genotype and Marriage should be taken more seriously. My heart goes out to all who might have been hurt at one point or the other because of this genotype issue.

I have been thinking for a while about writing and sharing some of my own personal experiences as I go about living my day to day life, with the blood disease known as Sickle Cell Anemia
To start, I will take you back to one of my most vivid memories in a day in the life of a person with SCD.
Please note that by family has being my source of encouragement, support and love. And I love them so much with no regrets.

It was the day before a special family time(a time all members of my family get to sit together, dine, talk, and share special moments together). I was very excited, yet worried at the same time.  I knew in my gut that I would probably be sick by time of the get-together, as the pain (slight) I had been having for days had not let up at all.  I was dehydrated and yellow in the eyes (jaundiced) and I just knew it would not be long before I got so weak I would not be able to get out of my bed

Let me first note that I’ve always been trying to hide my pains from others, (even my family- though I never got to hide it from them, as they already know how I feel, even without telling them). I just never told anyone I was hurting unless I couldn’t take it anymore.  I didn’t want to be anyone’s problem,(as I always felt I was a problem to the family, because I was always the only ‘sick person’, spending days and nights in the hospital- being the only child affected by the SCD). My promise to myself even while in school was definitely not to let anyone know my big “secret” (- because it doesn’t tell on my appearance as I’m well built).  

I was ashamed of not being normal(as people keep saying “why are your eyeballs yellow?” “do you suffer yellow fever?” “Why are you always sick”) and never wanted anyone else to know this lifelong illness I had.  
I cried secretively when I could and tried my best to act normal in front of everyone.  I never wanted anyone to find out how vulnerable or weak I actually was.  The only good thing I can think of from doing that is that my high tolerance for pain now is so significant!

Anyway, on the day of the get-together, I felt as if I got crushed by a heavy duty lorry.  I didn’t want to move an inch in bed(as my legs were losing its strength speedily) but I struggled to get out of it.  For those who don’t realize, people with Sickle Cell can have pain almost everyday.  That is my reality.  For me, EVERYDAY I am uncomfortable somewhere.  So, when I got out of bed my facial expression showed I was in pain, as my dad sighted me he said to me “We are going to the hospital right now, you hear me?”. I didn’t even fight it; he just got up and carried me straight into the car(as I could barely walk and was already fighting hard not to burst out in tears, as the pain became so unbearable.)

I ended up being admitted to the hospital that day (as I’ve been known as an “emergency patient” in the hospital) I ended up getting fluids, and different medications through a PICC line I had.  After four days of going in and out of drug induced drowsiness and being babysat by my parent interchangeably, I felt good enough to go home.

After arriving home, I began to wonder “why me”, as I’ve had so many visits and stays at this particular hospital and now one of their most popular patients. I kept questioning God why it has to be me, as my parent and younger ones has never stepped into any hospital for treatment. I began to feel like I wasn’t part of the family.

As years went by, I knew more about my problem (Sickle Cell Disorder), the “must do” and “never do” Even though I’m grown now and totally know how to take good care of myself. I owe it an obligation to advice intending couples on the need for genotype compatibility. Yes! There’s known cure for the Sickle Cell Disorder, but you shouldn’t know what it feels like raising a child with such disorder.

I’ve lived in pains and aches for almost all my life, and it’s not an easy thing. Indeed life is beautiful, but you have to paint it as bright and beautiful as you want it to be. And the first step to doing so is by knowing your genotype and getting married to someone whose genotype is compatible with yours.
For those whose relationship ended due to genotype incompatibility. Take heart and be strong, trust me you won’t want to raise a child suffering from Painful episodes (crisis) such as Acute Chest Syndrome, Chronic Pain Syndromes, Vertebral Body Collapse, Leg Ulcers or Arthritis

God have a better plan for you and your future.

ItsModella:
Wow, this is the first time I'm hearing of genotype being included in a job questionnaire. [/b]I am dismayed that the people who claim to accept by merit discard that principle based on genotype. The world is not an easy place and you're right, you can't change its view but you can learn to interpret your own view the way you want to. While we discourage couples not to marry based on incompatible genotypes, we also have to encourage and tolerate those with SCD. Awareness is the key in everything.

Abali1: 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.

jp philips:


@ bold quote


ignorance! ignorance! ignorance!

any organization with medical benefit or medical insurance must check TB, HIV, Genotype then others.

thats why loads of peeps dont make it past medicals even when successful with interviews.

Mynd_44: Very touching story. I also subscribe that parents should not risk having kids with that disorder but that should not stop them from getting married. Why should you not marry your love cos he carries a gene. Kids can be adopted and y'all will be happy.
This is a very moving tale though.

Ujujoan:

I know you are going through something really difficult and I can't even begin to pretend to understand. But look at the bright side . . . you have a family that absolutely loves you!

Your parents and siblings will ALWAYS be there to help you through it. Some people are not that lucky!

I've seen people with SCA who don't go to school cos their parents don't want to 'waste' money on their education!

You have a strong support system, please make use of it.

When you feel down, talk to someone, your dad, your mum, siblings e.t.c. Please I beg you, do NOT keep your pains to yourself. It's only eat you even deeper!


Trust me, no matter how sad and sorry you feel, your parents feel even worse . . . . You can help them by sharing your pains and not bearing it all alone!

I can tell you as a mother, that what hurts more than watching your child suffer, is NOT knowing she is suffering! A parent derives joy buy having to share in her child's pain . . . it gives them a sense of fulfillment.

What I'm trying to say with all these my long post is that, don't try to hide your pains from your family. You may think you are 'shielding' them, but you are only hurting them more. Please let them help you.

ItsModella:
I have applied to jobs where I wasn't asked for genotype even though I was asked for health records.

in Nigeria? which health record doesn't carry Genotype anyways