Abali1:

It's actually a good idea to meet once in a while, at least to put a Human Face in the new forum that will be created. So that people can actually see us and hear us talk live.
The only problem I envisage there, is that we live in different city. Unless we rotate the meet.

@deco, the names are okay. But let us brain storm some more and wait for other peoples input. As FKBZ said, this could be bigger than sickle cell foundation.
Talking about sickle cell foundation, you guys only need to visit there site and you will be disappointed.

...Yeah, we need more say on dis...

Idowuogbo: ^seconded!

I c u blink! Morning...

mor...evening dear. Just returned from criss-crossing delta state.

blink182: mor...evening dear. Just returned from criss-crossing delta state.

what's your opinion about us having our own forum?

Abali1:

what's your opinion about us having our own forum?

been thinking about it, really don't know. I guess you guys should go on with it. What worries me is traffic, how do we get sufferers and their loved ones to know about it? Nairaland has tremendous traffic and by far more reach than a new website.

Lmao! I only need the admin position

blink182: been thinking about it, really don't know. I guess you guys should go on with it. What worries me is traffic, how do we get sufferers and their loved ones to know about it? Nairaland has tremendous traffic and by far more reach than a new website.

Yeah...that's anoda thin...

Nairaland got d traffic

deco_slim:

Yeah...that's anoda thin...

Nairaland got d traffic

Okay. If we are to use NL, we still need to put a human face to it. We can still use NL, to organise a meet at least quaterly.
How do we fo about this? Creating awareness can go a long way to help other sufferers. What do you guys think?

Abali1:

Okay. If we are to use NL, we still need to put a human face to it. We can still use NL, to organise a meet at least quaterly.
How do we fo about this? Creating awareness can go a long way to help other sufferers. What do you guys think?

That's would be okay....

But it seems will need others say on this..

Thanks Abali for this thread.

I wish I could contribute more but the thing is I'm not used to dwelling on my condition ie I live in DENIAL. I don't act or talk like I have anything to do with SCD.

That's how I went from start to finish in UNI and NONE of classmates knew for 5 years, apart from my roomates and close friends. Even then I had to tell some of them.

It was a girl in my class who met me at a clinic on campus who found me in pains one day and I told her. She then went viral with the info. This was after graduation.

The SCD forum is a good idea, especially for those who need support and want to know about new medications.
I personally never heard of CELLOD S before. However, I'm also one of those guys here who isn't big on pills either.

I stopped, taking folic acid and paludrine almost 20 yrs ago. Instead, I use a more esoteric combo of herbs and supplements to stay fit. If anyone wants a list of what I use I'd be glad to oblige.

Another issue I think is interesting is AGING in SCD. When we are younger we look younger than our peers. But if care is not taken, we could be looking 75 by the time we are 50. I guess its to do with decreasing levels of fetal hemoglogin and chronic effects of oxidative stress. Or what do you think ?

So we should also talk about how we can age with more grace.

Back to forum matters, we could actually get or wordpress hosted site. These usually have good rankings on google and will generate traffic with the right content and keywords.

blink182: mor...evening dear. Just returned from criss-crossing delta state.

U go groove abi? Hmm... Blink! Blink! Odiro easy....

pinky85: Thanks Abali for this thread.

I wish I could contribute more but the thing is I'm not used to dwelling on my condition ie I live in DENIAL. I don't act or talk like I have anything to do with SCD.

That's how I went from start to finish in UNI and NONE of classmates knew for 5 years, apart from my roomates and close friends. Even then I had to tell some of them.

It was a girl in my class who met me at a clinic on campus who found me in pains one day and I told her. She then went viral with the info. This was after graduation.

The SCD forum is a good idea, especially for those who need support and want to know about new medications.
I personally never heard of CELLOD S before. However, I'm also one of those guys here who isn't big on pills either.

I stopped, taking folic acid and paludrine almost 20 yrs ago. Instead, I use a more esoteric combo of herbs and supplements to stay fit. If anyone wants a list of what I use I'd be glad to oblige.

Another issue I think is interesting is AGING in SCD. When we are younger we look younger than our peers. But if care is not taken, we could be looking 75 by the time we are 50. I guess its to do with decreasing levels of fetal hemoglogin and chronic effects of oxidative stress. Or what do you think ?

So we should also talk about how we can age with more grace.

Back to forum matters, we could actually get or wordpress hosted site. These usually have good rankings on google and will generate traffic with the right content and keywords.

welcome and interesting contribution you made.

Idowuogbo:
U go groove abi? Hmm... Blink! Blink! Odiro easy....

yes o, my saturdays are usually booked.

Are we ready...let's get started

deco_slim: Are we ready...let's get started

Deco, we need to open another thread for this budding idea. I doubt if we can achieve much on this thread, cos it's already losing steam.

Goodmorning all.

blink182: yes o, my saturdays are usually booked.

Hmmm... Okay o! Do I get invited to d next grooves?

Deco! Ur idea sounds great....lets do dis!

Abail! I c u 2 hun! Morning warrior..

Abali1:

Deco, we need to open another thread for this budding idea. I doubt if we can achieve much on this thread, cos it's already losing steam.

Goodmorning all.

very true.

Wow! This is so wonderful. I was researching about SCD on Google for my upcoming short documentary film when I come across this thread.

I have learnt so much about SCD from this single thread and it has really encouraged me to continue the project.

Please, I'll be grateful if you guys can contact me thru:

Briareos806@gmail.com

Or drop your numbers on that email and I will get back to you.

Addendum:
There is no harm in getting another forum while a thread is been maintained on nairaland.

Briareos: Wow! This is so wonderful. I was researching about SCD on Google for my upcoming short documentary film when I come across this thread.

I have learnt so much about SCD from this single thread and it has really encouraged me to continue the project.

Please, I'll be grateful if you guys can contact me thru:

Briareos806@gmail.com

Or drop your numbers on that email and I will get back to you.

Addendum:
There is no harm in getting another forum while a thread is been maintained on nairaland.

Briareos, thanks for your suggestion.
Guys, it's high time we take some action. At least lets start by contacting each other through emails, then we can move up to phone numbers and by His grace we will meet face to face.
My email is abiaaba4@gmail.com,
briareos I will be sending you a mail shortly.

Goodmorning warriors and lovers of warriors

That's true...dis trend is reali losing stem...

So let's get our forum?

deco, is time to start contacting people off NL. My mail is up there.... And just created a new thread for creating awareness in the form of contacting people and hearing their stories (for those who will not want to really talk to anonymous people.)
Blink, Deco, Strong and all warriors please lets tell our unique stories. Your emails will be needed here or on that other thread.
LET'S GO THERE PEOPLE.

Thanks Abali1, I will reply you shortly.

A facebook group or fanpage wont be such a bad idea. Most people check fb everyday and updates their will be easily assessed.

Briareos: Thanks Abali1, I will reply you shortly.

A facebook group or fanpage wont be such a bad idea. Most people check fb everyday and updates their will be easily assessed.

I thought about that (I mean a FB page) but you know some people will not really want to be know as SCD sufferers. But if we can get enough people on board, then a FB page will really help us to create the needed awareness. Let's hear from others.
Deco, I hope you can help us create a FB page when the time comes.

Sori I have been off this thread tnx to glo,the bb service provider. Keep me posted about the webpage.
I have abandoned folic acid n paludrine n bco long time ago cos takin drug evryday is annoyin. Also,bco gives me too much drive for food n wt ma healthy appetite,I dnt tink I need enhancement jor. Tinkin of goin back to folic acid

@ Deco- I hope you av been takin your drugs regularly or else!!!

queen binte o: @ Deco- I hope you av been takin your drugs regularly or else!!!

queen, what do you say to having our own FB fan page. We need to put a human face to create and spread the awareness.
Visit the other thread or drop your email here. I will contact you off NL

Abali1:

queen, what do you say to having our own FB fan page. We need to put a human face to create and spread the awareness.
Visit the other thread or drop your email here. I will contact you off NL

Which other thread. I can't drop ma email here cos d addy is in ma full name. Try bureo0320@hotmail/gmail.com wil check if they are stil functionin. Tnx

queen binte o:
Which other thread. I can't drop ma email here cos d addy is in ma full name. Try bureo0320@hotmail/gmail.com wil check if they are stil functionin. Tnx

yeah, I understand. I actually created a new mail because of this thread. The mail addy is abiaaba4@gmail.com
I will send a mail to the ones you listed above, Abali1 will be the subject.
The new thread am talking about is, Project Sickle Cell Disease Awareness. I created, cos this thread is gradually losing steam.

Abali1:

yeah, I understand. I actually created a new mail because of this thread. The mail addy is abiaaba4@gmail.com
I will send a mail to the ones you listed above, Abali1 will be the subject.
The new thread am talking about is, Project Sickle Cell Disease Awareness. I created, cos this thread is gradually losing steam.

Got your mail. Tnx. Pls send future email/correspondence to bureo0320@hotmail/gmail.com
Ayam suprised that deco is stil on this thread!!! Up deco!!

deco_slim: That's true...dis trend is reali losing stem...

So let's get our forum?

Deco, please make out time to visit this thread. Am already in contact with some people off NL. I aslo need to contact you off NL.

nairaland.com/1097963/project-sickle-cell-disease-awareness#12901774

Abali1:

Deco, please make out time to visit this thread. Am already in contact with some people off NL. I aslo need to contact you off NL.

http://nairaland.com/1097963/project-sickle-cell-disease-awareness#12901774

my email 2lanre@ovi.com u can also add me on nokia chat

Abali1:

I thought about that (I mean a FB page) but you know some people will not really want to be know as SCD sufferers. But if we can get enough people on board, then a FB page will really help us to create the needed awareness. Let's hear from others.
Deco, I hope you can help us create a FB page when the time comes.

Yeah...I can create a fanpage when d time comes

queen binte o: @ Deco- I hope you av been takin your drugs regularly or else!!!

Haha!...

Not reali...but for some days now I've been down with body pain... That's y I haven't reali ben active...

But am back...

Right now am trying to be used to folic acid and bcomplex...

Small small I will add other relevant drugs...