honey86: You guys are really warriors, may you always find the strength to keep fighting. pls I have a question, if I go for blood donation and they find malaria parasite in my blood, does that mean the blood is a waste or do they do some kind of purification on it.

lameda07: May God almighty reward you for this piece. I'm already threading that path ignorantly and this is a call for me to checkmate the journey so far and affirm compactability. Can you please do justice to the question asked about the female warriors not conceiving easily.Thanks a lot.

tipsydude:




Anyways, I am Bryte. I am a WARRIOR too.
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.

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[/b]is something that I pray no one should ever experience.



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,[b] I do not blame my parents for my condition. They really had no idea about the concept of genotype when they got married.

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.

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.

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 [/b]cos in truth, the pain we go through during crisis can actually drive someone with AA/AS insane. FACT! Besides, [b]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.

tipsydude:

degurl: Op God bless you for this enlightenment. I pray the Lord strengthen you more and more in Jesus name.

Its not easy convincing people (intending couples) about the future dangers of two AS individual marrying.

Just two days ago, I did genotype test for a lady and the result came out AS positive. She said her fiancée is AS too and they are preparing for their wedding. I told her the dangers of both them getting married but she gave me this "what is your business, it's our life " look. So I encouraged her to see a Medical Doctor for better explanation.

Malubi: Can inform the House of the drugs to be managing Circle cell.

makahlj2:

The sickle cell anemia is not more prevalent in Europe because there it had to compete with another type of hemoglobinopathy - Thalassemia.

eahk: @ OP this so great of you..
My beautiful wife is a warrior and even as I type she's in crisis and pregnant and I just gave her IV painkiller..(I'm a doctor).
Thanks for correcting all those misconceptions about warriors..the pain, d stigma, the 'you-will-soon-die' look people give them..the fights with my parents and siblings..but through it all God has been soooo good to us.
And she's a mega-strong woman..and when I tell people where she works they envy her considering her status.

Don't let anyone stigmatize you or even look donw on yourself..its just a condition not a death sentence.

mfess: anytime i remember the way the doctors attended to her when she was hospitalized(the 1st and last in my 19years with her), i just cant help but pray for them (the other way round though). They were just so annoying. Didnt attend 2 her urgently and when they did, it was like she was just normal when in the real sense she wasnt (cuz at that point her pcv was as low as 7%!).

Wanted to transfer her but they kept say they got everything under control (stupid us) until they saw she was bout to leave us. Then they quickly referred us elsewhere.

When we arrived at the other hospital and the doctor called me in for questioning, (at that time grandma couldnt talk anymore) after going through the referral letter, he just screamed "mama is a sickler?" - guess he couldnt believe his eyes.

Then as I started explaining things to him (beginning with "it all started...", someone rushed in to inform us she was dead.

Sageez: thanks so much for d topic, my galfrnd is a sickle buh i am AA, what are d posible outcome for o future children, wil dy b sicklers too?

mfess: lost my grandma (genotype SC) some
weeks ago. Though she died aged 76, I
still cry alot anytime I remember our last
few days together. She was a rare gem.

Sleek05: Lobatan....My boyfriend and I are both AC...op, pls tell me CC aint dat bad!

Cashio: We were born 8...lost three to dt evil...the only one survivor is now 23....i feel like dieing weneva i see him in pains..sometimes i imagine (never asked him though) how those pains are like....u see a fully grown guy shouting and crying as though he is burning in hell...the crises intervals are reducing as he grows older and wen they occur,they are not as serious as they used to be wen he was younger...not lazy cos wen we were small,we play ball together,go to stream together. infact he does things jst lyk a normal person jst dat ma parents do restrict him at times...he now owns a game house....but he is so stubborn..never listens to instructions even concerning his own health...always does that wch his mind wishes...missed him so much cos it's been two yrs since i left home...may God grant my sweet brother longer life and one devoid of incesant crisis....*sobs*

rezzy:

I have one in the school i teach. She is very very brilliant. I feel for her but i dont think the parents do. As cold as the weather is, she doesnt put on cardigan and kept breathing with difficulties. When you stand in front of the class, you 'll hear her breathing. I just pray God keeps her.

Neye1973: Fantastic write up.i actually joined cos of this white up becos I am a warrior. I am 40, I hold OND,HND,B.SC and just came bak from the UK for my masters.i am married with a beautiful girl.so there is nothing impossible. As amballi said the most important is to understand yourself as a warrior and keep fighting. If you need any help ou can call me on 08052244200. You can look and buy DIoscovite which I gathered is one of the finest drugs now.

blink182: OK I sent you a mail.

sweetrie: thanks, been trying to get in touch with them, can't get thru. Wud appreciate it if u can give me a link or tell me where I can get d drug

sweetrie: . Thanks, will ask a doctor. But how effective for U wud U say it is and do u take other routine drugs eg paludrine,folic acid or just d Cellod-s

write2obi: If only I was this informed, Okechukwu my kid brother might still be alive now, *SMH* may you find peace where u are right now. AMen.

sweetrie: @ Op, how does the "Cellod-s" work. It just gets so frustrating living wit SCD, but there is a GOD

Miss Ope: Can some1 plz explain 2 me the difference(s) betweem Ss and Sc.

Sirgen05:

Let me clarify you on this!
SCD is a genetic adaptation to reduce the incidence of malaria. This is cos the plasmodium species causing malaria rarely survive in the SCD red blood cells which have reduced oxygen concentration and life span. This makes it RARE among them when compared to the general population with normal shaped red blood cells.
However, malaria in SCD is very fatal when they eventually come down with it! This is cos the infection leads to hypoxia and anemia which are triggers to Crisis in SCD.

In summary, malaria is rare(but can affect them) but FATAL in SCD.
Thanks.

queen binte o: 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.

Synthase: I was refering to that article that said mosquito bites caused d gene mutation that led to d SS genotype, no roport has given a conclusive cause of d mutation, we just know a non conservative mutational change occur leading to d SS genotype...

Sirgen05: Another misconception bothered on intending couples(both AS)who believe that out of 4 children they will have only 1 will be SCD! That is 25%.
That is wrong! What it means is that in EVERY PREGNANCY, if both partners are AS, there is 25% chances of having SS, 50% of AS &25% of AA! That is in every CONCEPTION! It means ur 1st 4 children can all be SS or AS or AA or Mixed up!!
Intending couples take note! Thanks.

Synthase: I dont think so...

blink182: oh, I'm not in the best position to do that. As you know I'm well and not really privileged to interact with sufferers closely but this person will do an amazing job at explaining things. 08060538467.