We av a group on fb 'Naija sickle cell warrior' created by op!! join us!!

tipsydude: Kudos to the young man who started this thread. You are indeed a WARRIOR! I have taken out time to read through every comment since after the OP started the thread, and I must confess that I have not come across a more intelligent convo since I became a member on Nairaland.

Anyways, I am Bryte. I am a WARRIOR too. Though you wouldn't know it if you met me in person. I detest referring to SC/SS as a disease, cos it isn't. The most acceptable term is condition/mutation. Living with it can be quite challenging, and it makes the victim develop some weird habits. For instance, you would think I am either Lot's wife, or a relative, with the way am so conscious about getting caught out in the rain. Sometimes my junior bro makes jokes whenever we are hanging out with friends and I point out that it's about to rain. He sometimes asks if the roof of the joint will cave in, or if our vehicle is a convertible we purchased without the hood. My phobia for rain was formed during the times I was caught out in the rain as a kid. The crisis I had to put up with due to the cold is something that I pray no one should ever experience. I would say I have experienced all the life threatening phases of living with SC/SS, and I've weathered them all. I am still standing. I still have my wits about me. My brain is still sharp and my sarcasm still very much alive.

Growing up was fun. That's how I would like to classify it. I mean there's no greater fun than staring death in the face and beating it every time. My mum once said that the only time she would panic during any of my crisis is when I no longer have a pun to drop, or don't give a sarcastic response to any question that I consider unnecessary.

In my own case, I do not blame my parents for my condition. They really had no idea about the concept of genotype when they got married. And before they could appreciate my situation, they had given birth to 3 kids already, and my mum was pregnant for the fourth. It made them so devastated and skeptical that our last born, the fifth child was born 4 yrs after the fourth, whereas there is a 2yr gap between the first four. Out of 5 of us, 2 of us are warriors, myself and my immediate junior sis. We are still intact, pursuing our various endeavors.

When it comes to meds, I think I've taken everything, except Cellod-S. But for some years now, I have been on NOTHING. I try to take my anti-malaria stuff every 6 months. Crisis is now ever so rare. I do have Diclofenac SR handy though, just for when it sneaks up on me. It helps me with severe pain. But for minor pains, I go with Panadol Extra. Truth is, I hate meds, but you can imagine how it is for one who has a condition where you should have a mobile chemist handy. Whenever the crisis can't be controlled by the Diclofenac, I get an infusion to help dilate my veins. Once the infusion starts coursing through my veins, I begin to feel relief.

As for the severity of crisis, I think it varies from person to person. Like I said earlier, I have been through all life threatening stages of SC/SS. I have had crisis where my shin bone in both legs cracked vertically. You wouldn't even need an x-ray to see it. Mere running your hands down my legs would make you aware of the cracks in the bone. I was skinny then so you would be sure of what you were touching. I have also had leg ulcers. That was when I got my first job. Just below the ankles of both legs. They actually cost me my job cos I had to resign so as to get full time medical attention. I still have scar tissue on the spots. I once had swelling/protrusions on my head when I was in my 1st year in university. Made me start wearing woolen hats and miss school for some weeks. People saw the hats as a fashion style, or a cult label cos it was more or less dark coloured head-warmers. Only my immediate family members knew what lay beneath the warmer. I remember one day I couldn't make it to out to the sitting room, so I was lying in the bedroom without the warmer and one of my aunts came in to see me. I can never forget the look on her face when she saw the swellings on my head. Her expression made me burst out in serious laughter, even before I greeted her. During our conversation, I realized that she was using her questions to ascertain if the swellings indicated a defect in my mental capacity. I later found out that she feared I had brain tumors. I weathered that too.

Presently, am getting an M.Sc in Industrial/Organizational Psychology. Not working though. My immediate junior sis got an M.Sc before myself and she's working. She's actually an expert in French Language cos that's what she studied up to M.Sc level. Our parents did everything withing their ability to preserve our lives when we were little kids. My dad was being bled like a sacrificial lamb whenever we needed blood. Sometimes he donated for both of us within 7 days. It was that bad. They tried both orthodox and traditional remedies. My dad was miraculously spared by GOD from the hands of armed robbers on one of his trips to the University of Ile Ife to get roots from a professor back then. But what I admired most was their faith. After being put down by guilt when they realized their error in being ignorant about their genotype, they dedicated all their resources to knowing about SC/SS. And they believed that they would not lose myself or my sis. We adopted that faith from them. And the moment I could think for myself, I started reading every literature on the condition. Till date, I keep up with latest developments in the management of the condition.

I have come across some contradicting information from professionals about the management of the condition. But there are some consistencies too. I NEVER over stress myself. I ALWAYS listen to my body. I DO NOT smoke or take lager beer like water. I only do on very rare occasions, and never exceed a can of star or 2 cans of smirnoff ice. No more. I take plenty of water. I EAT everything. I LOVE my proteins and vegetables. I do my sit-ups and push-ups cos I realized that the abs make the ladies go gaga. I maintain my body weight at 67kg. No more, no less. I observed that I fall ill often when I am over 67kg. I ALWAYS stay positive in every condition. And I pursue my dreams. No room for depression, or negative thoughts.

People with SC/SS are like everyday people. But the truth is that they have a higher mental capacity, and people tend to misunderstand them a lot. Even family members. Not a boast but, I actually have one of the highest IQ's in black Africa. Trust GOD to know how to compensate people who are lacking in one aspect. HE sure knows how to balance things out. WARRIORS have a weird sense of humuor. And they are very fluent in sarcasm. Majority of us don't like to be pitied. If you must know about our condition, empathize and don't sympathize with us. Most of the girls I dated back in my university days never knew my health condition. WE ARE NOT MARKED FOR DEATH as most people think. People that don't have SC/SS die everyday from very careless things, so why the extra pity? Like it was said in Mortal Kombat, SAVE YOUR PITY FOR THE WEAK. WARRIORS aren't weak cos in truth, the pain we go through during crisis can actually drive someone with AA/AS insane. FACT! Besides, since I stopped experiencing crisis, I became the healthiest member of my family. I don't suffer all those other minor afflictions. But, I DREAD malaria seriously cos in my case, if I can stay over 12months without malaria, then I would have no complain whatsoever.

So that's about it people.

Loads of hugs for this write-up!! Lol @ Lots wife relative. Frds n colleagues do mak fun of me on that. But they don't understand the pain crisis that cud b triggered by rain(or cold water in particular)

Is there no way we can kill all the mosquitoes in Africa? @ Abali- dude!! I need you on whatsapp orBBM jor!!come to fb let's chat.

Am not trying to derail this thread,just wondering why there is no topic about 'Malala Yousafzai'? Today is her 16th birthday. Am sure nairaland is not all about Nigeria.thanks

Christmasdon: .. Yes! I think a pan nigerian accent is any one who is much educated. Like 10 o clock radio network news u see an hausa, igbo, yoruba man/woman presenting news. You hardly hear their accents. Check it out and see.

So what happened to their igbotic/yoruba/hausa accent?

drake2005:

That's another debatable word. People in the East coast( New york, New Jersey, e.t.c.) would pronounce it as " rowt or raout as you wrote" but we, in the western(Wyoming, Arizona, California, Washington, Colorado,and others) and people in the Midwest states( Minnesota, Illinois, Wisconsin, and others) pronounce it as it is written "root". Now, from an educational or professional speaking stand point, listening to professors and news presenters, they tend to use it within different contexts...give you an example. When referring to a specific road (like Route 66), most would use "root" as it is written, however while [r\aUt] is for a course of travel, i.e., paper route, or an example "I tried a new route today to get to the cabin."

So more of different pronounciation for verb n noun or just context? Raout is what I do hear on hollywood movies. Americans sef. *phew
Nb-forgot to add anti,pronounced antai!! Wahala dey o

Afam4eva:
I coined it actually but that's the best term to use to refer to the accent. Another phrase that can be used to describe it is "Nigerian elite accent."

Got it!! 'Aje butter' accent ,right?

Afam4eva:
The accent you hear Genevieve. Wizzkid, Tiwa Savage, Omotola speak is the Pan-Nigerian accent. It's neither Igbo, Yoruba or Hausa accent.

Biko, oga Afam,did u coin the word pan nigeria accent or wat? I stil don't get ur explanation of pan nigeria accent,break it down pls.

Diasporan:
Soda vs Mineral(soft drinks)
Cookies vs Biscuit
Trunk vs Booth
Na wa for America sef

Route is pronounced raout
Street vs block
Ground floor vs first floor
And the spellings: labour vs labor,colour vs color.

@ Afameva-whats Pan Nigeria accent,biko? Maybe I need to start imitating those americans via hollywood.you know wat am sayin,y'all!! Lol

Diasporan: Nigerians that i can't stop laughing at are the ones that resides in None speaking European countries i.e Belgium,Spain,Ukraine that will still want to form foreign accent

They are all over Lagos. They have never been outside the country all their lives yet their accent is ridiculous!! Shior

mikedore: Gudday poster,i just came across ur post. Am a sickle cell sufferer,i have passed tru many challenges and i thank God 4 good health. I wil lik to meet other sufferes. Do we have a union. Pls reach me on cal or text. 081xxxxxx God bless.

We tank for whre we are today. Join our fb group,Naija Sickle Cell Warriors. The op is the admin. Ure welcome. U can also like sickle cell warriors(created by americans),its more active than ours. Hope ours will bcome active too wt time.

uchechuwku:

I'm AA and you know the funniest sh*T ever was that it was my GF that broke up with me.
My mum was happy tho.
I love her to pieces.
She couldn't handle the love anymore saying that I'm with her out of pity. I'm much more of a nanny than BF.
I just couldn't help it. She's d best gurl ever (minus the crises tho)
I kept records for her.. Date of her crises, the last food she ate. Her drugs, weight gain/loss.
And she broke up with me?
Really, life is bleeped up..like so bleeped up.

we dnt like being pitied.am sure she tot about it bfr breaking up wit u.if someone lik ur mum could be happy abt the breakup,I tell u she wouldnt support a union assuming there was no break-up.

Pdizzle:
pls wat is the group's name

Naija sickle cell warriors. U can also join sickle cell warriors,its a very active forum unlike ours. Their disussions centre on day to day issues faced by pple living wt SCD,their frds,families,gf,bf, Ÿ̲̣̣̣̥ø̲̣̣̥u̶̲̥̅̊ name it.

Ms.AfroZest:
For some weird reason this thread makes me angry and sad at the same time. Just like HIV, its not only the disease you get to fight but the stigma and rejection you get to face. We are all here talking about people avoiding AS/AS relationship. What about those already living with SS. How many people with the AA gene can truly come out and say I can marry an SS.

Very few. The day a frd told me his fiancee is hbss,I cud nt contain ma joy. Since then I hold I'm in high esteem.now they are married wt a baby girl. So many hbAA won't marry hbSS/SC cos they believe we weill soon die.even if they want to,their fam wil kick against such union unless they are nt aware. I kno pple wt SCD who are happily married wt kids but some of us are stil unfortunate in that rgds.hopefully,we wil get married some day.

blink182: its not about blowing my trumpet, queen already gave me a very good reply and I'm following from there. No time to waste on insignificant issues. What matters most is bringing peace to sufferers.

I said claims and I didn't say it was backed by empirical evidence.

Oya carry ursef to our fb group sharp sharp.lol

Yes we av a group on fb,Naija Sickle Cell Warriors. We only av passive n dormant members. Pls join n let's make it active just lik 'Sickle Cell Warriors' by the americans. I av learnt a lot from their comments.

Spirit1:

STIGMA?? What stigma are you talking about

Yes bros,stigma.we are the sufferers and we kno what we go tru in the hand of fellow countrymen/women. Being called sickler is one of the stigmatizatn. Then pple don't want to associate with someone who could die any momemt. But some of us av survived beyond the expectation of pple who know us. Living with pain on a daily basis is a stigma on its only. N then some of us get attitude from hospital workers as if we fake our pain. We get empathy frm workers in haematology dept of college hospital n dats cos they av direct contact with our cases. And some just pity us. We can't afford to self pity or being pity. We are warriors n survivors.

blink182: Oga only once a year you come out to really help with all you know. Do you think that is fair enough, ignorant sufferers should probably die in pain or hang on until June 19 when you come out to say something?

What have you done in the past year to alleviate crisis? Personally, I have become a crusader of cellod-s, taking the message to as far as UK and trying to get it registered in Kenya and Ghana.

Instead of telling people not to get married, why not let them get married to whoever they choose provided they do not forget to put their child on cellod-s.

I have seen so many patients become healthy, some even going as far as claiming they changed from ss to aa. I used to be the very worst case of sickle cell, mine is so bad that even after becoming healthy, I still developed avascular necrosis.

You mostly get infected with malaria when you sleep but is that to say we shouldn't sleep?...hell no! We sleep knowing fully well that worse case scenario will see us having anti malaria drug and in time we will be as good as new. Let's match together against this monster and make it an ordinary illness like headache.

I may be wrong, you might have done something to impact sufferers during the year but it pains me when I see the people really pushing the gospel of cellod-s are business people who simply want to make their money and have no true commitment to their patients.

Oga biko,maybe you have not been a regular caller here cos this OP has been regular with post on SCD. We have a group on fb(he is the group admin) n you join if ure interested. 'Naija Sickle Cell Warrior' is the group name.join and ask questions. Thanks @ Abali - I tink the heading should be about the reason for the 100million tweets,dats #WSCD2013 cos most peeps might not really be aware of June 19. We rock Abali

Happy belated birthday to us OP!! I had an amazing #WSCD2013 on BBM,FB n twitter. Let's chat on fb over the weekend.loads of hugs

Was there in time before she left.she autographed her pics for me too.Ib rocks, Filmhouse cinema rocks and Rita rocks!!!

eahk:

Yeah Ciklavite is a syrup for kids only.
But Hydroxyurea is for Both and its use should be supervised.

Whre can I get Hydroxyure n ow much?

Ladapo: Thanks for this level of Awareness aballi and I will want to encourage young couples of today to take this issue of genotype seriously before marriage. However, there is an issue I am still very confused about...I live in Canada but before relocating to Canada, have had to do my blood sampling twice and it was the basis of the result that I got married to my wife who is AS....I was told I was AA on the 2 occasions I had my tastings in Nigeria but when I got to Canada and we had a cause to do the testing again, 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 nt heard of AD but kno of CC n this means there wud be DD. Its beta pple go for genotype test  in teaching hospital. I have known ma kind of genotype since birth but was just nt sure whether its wt S or C. One of the mushroom labs tested ma bloodgroup as 0+ve n UCH testd me as AB.
All these roadside labs are confusionist.

@ deco - remember me? Ow far wit the medicatn? I stil have your cane here. You kno wat am talkin abt. @ Abali - tell him o

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

justwise: [/b]

Yes, but check their website to see if anything have changed since last time u applied.

Should I apply for 2yr visa?

justwise: [/b]

You will if you met the requirements.

Which requirements? You mean lik the supporting docs I provided fr the previous applicatn?

Lexaccord: Good day all d experts in d haouse I applied for a UK visa on d 1st of last month and I was refused based on my accountt was inflated and I might not have d money available for my trip. Pls note I work with a multinational and I put all supporting documents letter from my organisation etc I also have an investment of 1MM to mayure in March which has been running for 90 days. Actually d bulk sum of deposits d consular officer mentioneed were part of d investment I had b4 I reduced it to 1MM and I can clearly explain d bulk sum. Also 2 wks to my application I borrowed someone 500k which was returned d next day and d consular officer also picked that. I discussed with a friend who said I should get a good lawyer and appela as far as I can explain d deposits. Pls VicJustice sir and other experts my questions is can d decison be reversed and visa granted to me and again for UK appeal how many working days do I have left. Thank you all

I have the issue of bulk lodgement into ma acct few mths bfr ma applicatn n I was denied the visa. I reapplied again explanin ow I came abt the money. Provided the supportin docs of ma bro who sent †ђξ money frm US. I also told them I av been wrkin for the past 5yrs n am expected to av savings. The visa was later issued to me. Annoyling, I am unable to travel n †ђξ visa wil expire in the nxt 2wiks. I hope that ans ur questn. Best of luck

Hi,I have aa 6mth uk visa that wil expire in the nxt 2wiks and av been unable to travel wt it cos my employer didn't grant my leave. Most pple said I might nt be given a uk visa again but my cuz who invited me to uk n my bro's frd who lives in uk also tot otherwise. They said I should reaply for 2yrs ASAP (even though I dnt kno whether it should be fam/tourist) n ma cuz will send necessary docs.
The questn is, wil I be granted another uk visa since I didn't use my initial 6mths visa? Tanks

Even some northern Muslims have been jubilating on facebook since yestaday. Heard some northern Christian jubilated wen Yaradua died. The animosity between northern Muslims n Christians is noting to write home about. May God help us.

lorddannie: he needs to change his name to graveman, undertaker or necromancer or mummy

Very hilarious!! Can't stop laughing