WebSurfer:


Thank you..

We finally got it done by God's grace.

Was recommended to a place in the East where a traditional man removed some things from her body like a surgery, something our supposed hospitals couldnt detect all these while.


Spent around 130k for the whole thing.

Since then, everything stopped and she is perfectly ok now according to her, the last time i saw her was one of the happiest mood i ever saw in a long time.


Thanks and God bless you all.

Hi, can you please go into details on what was done for her. Im 47 yrs old and many others like myself know modern medicine has failed us before the advent of bone marrow transplant.

bamisho:


Abeg stop spreading false negativity. Many people with sickle cell now live much longer.

A woman in her 90s or infrastructure 80s was recently celebrated.

My father who drank like a fish and didn't even take care of himself lived to his 60s.

Plus I have an Uncle that was a Professor and Medical Doctor and lived well into his seventies.

A lot of progress has been made and the average life span is increasing regularly

I'm well into my forties...its not been easy but I'm taking each day at a time....a lot of others I know
are long gone. I thank God for his mercies.

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.

Abali1:

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.

@Abali

I know what you mean about stigma. There some type of stigma you can avoid and some you wouldn't.
Growing up I had so many experiences, its like they're better left unsaid. Also, pray that when the time for marriage comes these 'stigma' won't pop up again.
You'll find people 20 years older than you who don't even know how to be 'mature' about your condtion. Some people even believe you did something in a past life or your parents sins put you in this situation.
The truth is you grow a thick skin as you grow older,because you know you are a lot STRONGER than all those people. You've fought more battles than they can ever imagine themselves confronting and you WON.

Just be thankful for all the good days of health, don't allow the prejudice and perceptions of others stress you out.

Ujujoan:

Wow . . . I'm loving you right now!

Kind of you. Thanks !

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 !

Wow ! Nice thread. Found it thanks to google

Couldn't resist the urge to open an account and contribute.

I'm also SS, I'm very sure I'm older than the poster. I'm male with degrees and single too.

My Story (Edited and compressed)

Well toward the end of Uni, I met a nice girl who I'd been on 'hi-hi' basis since my 200 level back then.

She didn't know about my genotype until she asked me why my eyes were occaisionally tinged yellow at times. This was a few weeks after we started dating. Anyway, I did tell her and I got the biggest shock . She didn't want to break up and she became even more clingy !

The realtionship progressed,I met her family: mum, sister and brothers. I realised she had told her mum and suprisingly she seemed not to have a problem with it either. Her sister and I were good friends. Her brothers thought it was just a fling but we were cordial. Her dad worked in another state so I didn't meet him until much later.

When I did eventually meet him, I believed he had also been briefed. But he only asked about my parents who we discovered had many common friends with their family. He never seemed bothered the fact mu genotype was SS. Perhaps he hoped it was just a fling too.

My relationship with this girl grew and a few months soon became 2years. I wasn't getting younger and was about to leave the country for a masters. Our discussions were no longer about trips, parties and outings but now centred around marriage. She responded favourably to my proposals and soon both our parents were aware. Even at this time, we seemed to have full support from all four parents.

Eventually, I left the country keeping in touch with my now 'fiancee'. Long distance relationship isn't easy, it never is.
At times she would accuse me of neglecting to call, write or send things down to her. I couldn't understand what all the fuss was. I was in school, in a foreign country looking for part time work. Still trying to settle down.

She did come to visit once for a couple of weeks and it was jolly good fun till she left. But few months after she returned home, I got word from reliable sources she had been spotted with a new guy around Lagos.

I resisted challenging her over the phone, until she came visiting a 2nd time. She rained abuses and curses on the 'idiot spreading such lies'. I loved this girl and when you love someone you want to believe them.

She left for Nigeria again, later that year GSM rolled out in naija so I didn't have to call her homes landline anymore. I could now reach her on her personal mobile line. At least I thought I could.

Whenever she picked up the phone, it was one story or the other or "I will call u back" or it was switched off.

One night I called her house at 1 am only for her sister and mum to say they didn't know where she was. Eventually I got thru to her mobile later that night, only for her to say she was with 'a friend' before cutting the line.

To cut a long story short, though we went through so many quarrels and arguments, we still went ahead with the introduction and engagement. This was a big mistake as I later got confessions from a certain guy in Lagos who was keeping her warm while I was away.

By the time we broke up, she had become so cheap, unreliable and whorish. I caught her elsewhere practically red-handed with another fellow.Emotionally, physically and morally drained, I had no choice but to let her go.

It wasn't long afterwards I fell terribly ill, I was in a foreign hospital several weeks, no one was sure I'd make it out alive but I did. Thank God.

It took me a full year to really recover to point where I could say I was well again. I was just trying to get my life together again when I heard news.
My 'ex' was married and now had a daughter. Not only that, the baby was now 4 months old, living with mum in the US.

I called her sister to confirm the news, she did. Anyway, we didn't stop talking there and then. I and the sister spoke on few more occaisions, talking about how things broke down between me and my ex.
Eventually, she told me her sisters attitude changed for good after their dad asked her " why do you want to marry him out of pity ?"

I'm now over 35years old, and back in the country.
It hasn't been easy resettling here but I could no longer risk the effect of the cold over there on my health.
I don't have a girlfriend nor do I see any reason to want one. I do have friends who are ladies but I just can't see the need for serious relationships these days. Only souvenirs I have from my days with my ex are some scattered grey hairs , hip stiffness and some old pics which I've disposed of.

Will I ever marry ? I don't know.

Poster, if you're a lady you will definitely find a guy who will want to care for you the rest of your life.

But If your male like lke me, the chances of finding a lady to do the same are much slimmer. Although you may get offers from women approaching premenopause or nearly used-up girls who wouldn't have given you time of day 5 years ago.