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NyjaBabe
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Posted: Friday May 14th, 2004 15:18 |
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Hi peeps....
I wondering if you could help me?
Basically, tomorrow the 15th of May will be the first aniversary of my brothers death. He died from sickle cell related illness and went through a lot of pain in his life because of it...but it didn't stop him living his 32 years to the full!!!!
I was wondering if you could tell me 'what sickle cell means to you?' I know the facts but, i want to know what it means to you from a personal point of view. It angers me that soooo many black people do not know much about a disease that affect their own community but i'm hoping someone out there can prove me wrong.
Any replies will be very much appreciated as my family will be holding a party to celebrate his life in conjunction with the Sickle Cell Society next month where many artists are offering to support the cause. The replies i get will be displayed visually somehow around the walls...
 Thanks xx
P.s Check out his poem at http://www.good-spirits.co.uk
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NyjaBabe
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Posted: Sunday May 16th, 2004 19:31 |
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So what, 18 people can read this and can't even help a sister out...seen...now i understand!!!
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Sage
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Posted: Sunday May 16th, 2004 21:10 |
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@ NyjaBabe
I see you are new here. Welcome to the Village. Look don't take the lack of responses the wrong way. Someone will eventually answer your thread, as did I, so don't get discouraged.
I'm sorry for you loss. We just got the news that my cousin's new born baby has Sickle Cell and quite naturally we are all saddened. I am not clear if he has the trait or anemia. It is my hope the baby will lead as full a life as possible if it is indeed the disease. I am sure you are aware of the efforts of entertainer T-Boz from the group TLC. She uses her celebrity to educate others about Sickle Cell which she has. I used to be under the impression, it was found only in African-Americans but learned through a former employer that conducted fund-raisers for one of our local Sickle Cell chapters, that is not true..
I hope you got through the anniversary, which I'm sure was tough.
Stay strong
Last edited on Sunday May 16th, 2004 21:23 by Sage
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Happiness
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Posted: Sunday May 16th, 2004 22:46 |
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Hi Nyja babe - kedu?
I am not sure what you are looking for. Its hard to believe that any Nigerian is oblivious to sickle cell. In my family, one of the first questions that is asked when someone wants to get married is: is he/she a carrier? Of course, they mean a carrier of the sickle cell trait.
I will tell u what shocked me recently: an African American friend of mine who was obviously a carrier of the sickle cell trait (2 of her sibs died of sickle cell so she is at best a carrier or at worst has the decease as well.). Anyway, she got married to a Nigerian man without asking/investigating his medical background. She did not even discuss sickle cell with him. They have 3 children now....2 are carriers and the youngest has the decease.
My friend recently revealed to me the condition of the baby who is 18 months because I was there one day when the baby had a crisis. After everything died down, my friend told me that the oldest 2 are carriers. I asked her why she took the risk of having children knowing that both she and her husband are carriers. Her reply shocked me:
She said that she didnt know her husband was a carrier and only found out after they were married and the youngest was first hospitalised with a crisis and subsequently diagnosed with the sickel cell decease. That led to the older 2 children being tested and they were found to be carriers of the S. C. trait
I said to her: but you knew you were a carrier, that should have been enough for you to start the convesation with your husband before you married him and to make decisions about children.
sickle cell means to me: being educated and being responsible....realising that one's choices/decisions will have far reaching effects on you and on the children you may choose to bring into the world.
Your brother's words were beautiful
God bless - I, too, hope that you made it through yesterday.
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If you think that the only way you can survive is in the misuse of people,
then you haven't even begun to think about what it means to be human" ~ Dr C.T.Vivian
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NyjaBabe
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Posted: Monday May 17th, 2004 02:23 |
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@ Ashanti..........to be honest it wasn't as bad as i expected. Initially i wanted it to be just myself and my immediate family...but little by little people came to our house, those who couldn't make it called/text to express their support and they were thinking of me..it was quite touching. I'll tell you what though, it wasn't until my bro died that i realised who my REAL friends and family were.
All day i felt my brothers presence around me and knew he was watching over us and was happy that we were happy and most of all...we were not alone.
Though it is wonderful news I'm sorry to hear about your baby cousin, but that either way..trait or otherwise...that baby with live his/her to the fullest no matter what, i know the big man upstairs with give you guys the strength to perservere as it is HARD wor, trust me. I have the trait, but you don't get any real affects as the real crisis other than you have to be aware that there is a 50% if you have kids with another trait carrier, the child will have sickle cell.
Did your cousin know they had the trait..if you don't mind me asking?
P.S Thanks for the hug x
@Happiness....
Odinma! You will be amazed a how many black people i have come across, espcially in the past year that know VERY little about it. Some have not got a clue. They know about cancer, MS etc, not to say one is better than the other; i guess it's because it affect all people and not just a section of society. BUT STILL..As for your friend, that's terrible. She should have done her research properly!
Thank you for taking time out to read his poem, he wrote it during a long spell at the hospital a few years ago. Thanks also for your reply, MY FIRST!!!!!! 
God bless too! xx
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Happiness
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Posted: Monday May 17th, 2004 02:41 |
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@ NyjaBabe -
I would like to ask u some questions - but I will wait for you to get more replies so I dont side-track your thread!
anybody else want to support Nyja Babe and write a little piece for her on what "Sickle cell means to me"?
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If you think that the only way you can survive is in the misuse of people,
then you haven't even begun to think about what it means to be human" ~ Dr C.T.Vivian
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Sage
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Posted: Monday May 17th, 2004 17:54 |
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@ NyjaBabe
You are welcome. And to answer your question....I don't really know but I think it is safe to say that neither of them were aware.
I'm glad you made it through the anniversary.
Ashanti
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BlackBeauty
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Posted: Tuesday May 18th, 2004 02:27 |
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Hi Nyja-sorry to hear about ur loss.
My cousin has it, so it is in our family. My mum and my sister are carriers, i am not.
I dont actually know a lot about sickle cell  , only what I learned in school. I think because it is a disease that is not discussed all the time, or plastered everywhere like cancer, ppl do actually 4get it exists unless it affects them or someone close to them.
...That whole out of sight out of mind thing...sad but true...
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Saida.M
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Posted: Tuesday May 18th, 2004 13:16 |
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nyjababe
I hope you are coping and that you keep strong.
I too, am very ignorant about sickle cell.
 What exactly can we do to help?
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"One of the heads of the beast seemed to have been fatally wounded, but the wound had healed. The whole earth was amazed and followed the beast".
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NyjaBabe
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Posted: Tuesday May 18th, 2004 19:11 |
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@ ashanti, happiness, blackbeauty, athaba...
HIYA!!!
I'm not expecting miracles, money or the like from anyone. All i ask is just two things really...
1) just write down what sickle cell means to you...you could write 'nothing' or 'f**k all' as replies. Those kind of replies are just as good as a detailed reply as it means that there is work to be done to get the message across to everyone and i guess to show people that sometimes ignorance isn't bliss.
2) If you don't know....GET TO KNOW!!!  If you guys were living round my way i would invite you down when the event happens as i am sure it would be an intresting eyeopener for anyone, even myself. Even though i couldn't give you a dictionary definition on sickle (just a nyjababe style break down  ) ...i could sure as hell tell you the effects it can bring to the carrier and family. If you guys could do that for me, i would really appreciate it and know that i have somehow made some people listen and take time out to find out about sickle cell.
I would even be in the same situation as most people if my bro didn't have it. I would only hear a little mention of it in school, but thats it. I ask myself if i would feel as strongly about it if this was the case and i think i would at least know a bit about it. But where there's a will there is a way!!
my brothers sudden death has affected me in more ways than one emotionally and mentally, in a way i am happy that he died in his sleep as if you guys ever saw the kinds of pain he went through during his life, especially being a very active person, you would know what i'm saying and agree it's probably one of the best ways to go. Even though we were like 10 years and 1 week apart we were twin spirits and to see someone going through a crisis cuts you like a knife-just knowing that you can't do sh*t but be strong for them. In that sense I'm just happy it's over now and he's up there guiding me through life with his spirit....and being himself by chatting up Alliyah
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Saida.M
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Posted: Tuesday May 18th, 2004 19:35 |
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Playing devil's advocate, a little bit, nyjababe, but why should anyone 'get to know' if its nothing to do with them in the present time in thier lives?
I mean I could tell you to 'get to know' about some of the conditions that's around me, because it COULD be in your present or future life, but should I expect you to?
You are only thinking of your brother though and its right you should campaign on his behalf - but I ask myself how many other conditions do you know about today, that has no real or potential bearing on your life?
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People readily believe lies before they believe the truth
"One of the heads of the beast seemed to have been fatally wounded, but the wound had healed. The whole earth was amazed and followed the beast".
Good News Bible. Rev. Ch.13 V.3
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NyjaBabe
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Posted: Tuesday May 18th, 2004 20:31 |
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@ Athaba...
VERY TRUE...I hear what you are saying and i think that will go for most people reading this. If someone feels it has nothing to do with them, then it's cool- life goes on, i cannot force anyone to do anything they do not want to do. But i feel especially as a black person, you should know certain things that may affect you as an ethnic minority. i mean it doesn't just effect black people, there are other forms of sickle cell disorder, traits of which can be found mainly in african, carribean, eastern meditteranean, middle eastern and asian people.
I do not have any relatives that suffer from dementia, multiple serosis, breast cancer, leukaemia, aids, parkinsons or the like for example...... but at least i am AWARE of them to a certain degree.
i said i'm not expecting any miracles and being the kind of person i am, if you were willing i would listen and learn about some of the conditions that are around you, as that means i am willing to educate MYSELF about them, as regardless of tense- present or future- that infomation could be beneficial somehow personally or to someone else....
At the end of the day, i'm just fulfilling something my bro always wanted to do although he did his own presentations and the like at student unions and stuff and spoke from a more personal level. So i buzz the word is really AWARENESS.
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Bredder Tukoma
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Posted: Tuesday May 18th, 2004 21:55 |
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@nyababe
I hear you loud and clear, alot of people carry the trait and dont know so alot of people could benefit from knowledge of the disease../ i only know that if two carry the trait then they have to be VERY careful when starting a family.... but keep fighting the corner.. Regards to you and yours...
Peace
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facetygal
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Posted: Tuesday May 18th, 2004 23:38 |
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My cousin passed away from sickle cell about 3 yrs ago, he never lived to see his 21st birthday. His mum is a carrier and I think his dad either has sickle cell or is a carrier too. One of his brothers has sickle cell, the other brother and sister are fine. I will never forget the night all the family had to rush to the hospital because the doctors said he wasn't going to make it, this was after christmas, january. All I heard was my aunty's screaming and I knew he had gone. Just a minute before the family had to take it in turns to go in the room and see him, and I kept hearing my aunty say "I don't want to hear that machine stop, shush I want to hear the machine beeping".
Throughout christmas he was in pain, but he refused to go to the hospital, he said he had enough of being in and out of hospital. Because he left it so late to go to the hospital, had he come around he would have been a vegetable, as everything had shut down and stopped working. If he went at a decent time he might still be alive today.
I myself have been tested for sickle cell, I think everyone should. U can ask ur partner all the questions under the sun about themself or their family history, but if they have never been tested or don't know about their family history, then u and ur child are still going to be put at risk.
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NyjaBabe
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Posted: Wednesday May 19th, 2004 00:13 |
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@ facetygal
Sorry to hear about your cousin man...
I can COMPLETELY understand that whole hospital senario. With my bro, It was an unexpected death and we were last together 3 days earlier looking for material for my sisters wedding which was to be in July. We got a call from my older brother saying he was in hospital and we were to come QUICK. He didn't go into detail about it but we were to come. Going to the hospital was secomd nature with my brother even though he HATED it and didn't go unless he really had to (he caught MRSA and salmonella in the hospital the year before, some of the nurses weren't very clean, etc ).
Anyway...
i must say, i'll never forget the journey to the hospital in the minicab that day. Even though the radio was blaaring-i couldn't hear it after a while and the whole of central london just became a blur and i was getting caught up in my thoughts. I kept praying to god 'please, don't take him, don't take him, don't take him'...but deep down i had a feeling, that it was a posability he was dead....but i knew andrew was a fighter and he's was probably in a very bad way. We got there, we went into the family room and thats when my elder bro said he's gone. I'll never forget the sound of my mum screaming!!!! The banshee has nothing on her TRUST ME. I just sat there -NUMB, i couldn't even cry.
It took me ages to summon up the courage to see my bro on his death bed...even though he looked like he sleeping peacefully...i kept expecting him to sit up, you know...like as if to say 'alright Ange, it's not funny anymore get up now!'
I can't even carry on boy, even though i'm typing it's hard..you know?
But i'm happy you have got tested because at least YOU know where you stand, though you didn't say whether you have it or not.
Again my condolences sis..xXx
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Happiness
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Posted: Wednesday May 19th, 2004 01:24 |
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athaba wrote: Playing devil's advocate, a little bit, nyjababe, but why should anyone 'get to know' if its nothing to do with them in the present time in thier lives?
I mean I could tell you to 'get to know' about some of the conditions that's around me, because it COULD be in your present or future life, but should I expect you to?
You are only thinking of your brother though and its right you should campaign on his behalf - but I ask myself how many other conditions do you know about today, that has no real or potential bearing on your life?
Athaba -- I know u directed this at Nyjababe, but I would like to also add something. It is important for all black people to know about Sickle Cell because it affects sooooo many of us (people of African decent), which means that you could unwittingly marry some who is a carrier and have children who are carriers.....
.......they in turn could end up marrying another carrier who also comes from a family that has not knowledge/info about S.C. and consequently no discussion is had on the subject.
The end result is that the children of the 2 oblivious carriers....your grandchildren... have a 50% chance of having the desease. Sickle cell Anaemia is a painful, emotionally, financially, and physically draining desease....for both the sufferer and his/her loved ones.
That's why we should care...thats why all black people need to educate themselves about this desease and how it is passed on. This is the responsibility of each and every one of us.
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"What is your life worth?
If you think that the only way you can survive is in the misuse of people,
then you haven't even begun to think about what it means to be human" ~ Dr C.T.Vivian
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Saida.M
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Posted: Wednesday May 19th, 2004 13:59 |
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I understand what you are saying Happiness, but there are also other stuff out there that could be passed down to children, besides sickle cell, depending on who you marry.
My point really was to be aware of the other things that are out there too.
But tell me something, lets assume you, (really meaning anyone), meet someone and over the course of time you find out that both he and you are carriers. What should be the next step? Split up?
Just asking, because people are saying to be aware, but no-one is really saying what to do.
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People readily believe lies before they believe the truth
"One of the heads of the beast seemed to have been fatally wounded, but the wound had healed. The whole earth was amazed and followed the beast".
Good News Bible. Rev. Ch.13 V.3
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Burning Spear
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Posted: Wednesday May 19th, 2004 16:23 |
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Nyjbabe,
You and your family have my prayers for your loss. My alma mater Howard University in Washington DC has the only sickle cell research center in the US. Here is a link.Hopefully it can answer your questions. The number of taboos in our community concerning this diease is scary.
http://www.huhosp.org/sicklecell/
To be honest in the US there is not enough information that's put out there.I think most of us just pray we don't have the trait and move on. A friend of mine has the trait and had twins,but does not want to have more children because of the trait.
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facetygal
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Posted: Wednesday May 19th, 2004 16:58 |
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@ nyjababe
I know it's hard but the way I had to accept my cousin's death and not feel bitter, angry and sad that he was gone, was to accept that at least he wasn't in pain no more. Everyting happens for a reason, I strongly believe that, whether it is good or bad. I just recently lost my grandma christmas just gone, not to sickle cell, but she wasn't well all the same. She died in the same hospital, and on the same ward as my cousin. Their graves are not too far from each other in the same cemetary. So for me it was like I was reliving the whole thing with my cousin again. All I can say is stay strong and don't take anything or anyone for granted. Your brother may not be there physically but he will always be there in ur heart and in ur head.
By the way I haven't got sickle cell or even have the trait. My parents don't have it, but I was tested all the same before I underwent an operation ages ago. What I have to be careful of is diabetes, as both of my parents have that, and it runs strong in my family, that was partly the cause of my grandma's death.
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NyjaBabe
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Posted: Wednesday May 19th, 2004 20:36 |
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@ Athaba,
You first step would be to get tested for it. In the case of sickle cell you would know by now if you had it, but you wouldn't know you have the trait unless you had a blood test. I suppose that would go for any type of disorder that you think may be hereditry or what have you.
if you meet someone and find out that both of you are carriers then i guess that is down to the individual. It's a gamble, but i guess if you are trully in love you will have childen regardless-for better or for worse right? It's a 50/50 gamble. There were 4 of us he had the disease, i have the trait the other two were cool. That is one situation i have to be aware of when i want to settle down and have kids.
I know what you are saying about 'other things', but my thing is sickle cell as i garuantee that the other things you are talking about are things people could give me a staight answer, affects more poeple and/or is more commonly/openly spoken of perhaps...but thats just an asumption i could be wrong and i mean no offence.
@ Burning spear,
i have the trait like i said before, if i knew my other half didn't have it, if we decided to have more kids, then i would go for it!!! But i don't blame him for being cautious. At the end of the day if you have the trait you have the trait-ain't nutthin you can do about it. Obviously with cell division there is a chance they would have it too, again they would need to be tested at some stage so at least they know where they stand.
@ Facety gal,
girl, i hear you. I do believe that thing happen for a reason and like i said before i'm happy he doesn't have to go through all that pain. I guess god takes the good ones early. Sorry to hear about yor gran.....she too isn't feeling anymore pain and is in a better place. It's deep that they died in the same place. My bro died in the same hospital he was born in-talk about coming full circle! Just remember that when you go to the grave they are both by you just looking over you shoulder listening to what you have to say.
I too have diabetes in my family, that was what my father died of. Me and sugar go WAAAY back and i have the souveniers to prove it (fillings galore) but i need to cut down man, my mum always cusses me about the amount of sugar i consume, so i guess i need to keep a watchful eye on that....YOU TOO!!!
My chemist are doing a free test to see if you have it or not, i sort of had some of the symptoms but it the kind you can get commonly, like tiredness and i few others i forget. I have been meaning to go but i haven't got round to it. Even today i was thinking about it and my mum said i shouldn't as i don't want to scare myself. But i feel it's important and i will sort it out.
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Happiness
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Posted: Thursday May 20th, 2004 03:28 |
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@Athaba -- if I were a carrier and I found out that my partner was also a carrier, I would not necessarily spilt up with him, but I wouldnt' have biological children with him. I would adopt. I have watched too many people suffer trough S.C. - its just such a painful, painful desease. Anyway, there are enough kids in the world in need of a good home....
but even if one were to decide to have biological children and take the chance, the point is to have the discussion before you have the children.
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Saida.M
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Posted: Thursday May 20th, 2004 12:30 |
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Happiness: Discussing it won't deter from the fact that you MAY have sickle cell children though does it?
And if one does adopt - what if that child has sickle cell?
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Happiness
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Posted: Thursday May 20th, 2004 12:40 |
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@ Athaba - yeah you're right....but at least you know going in what your in for. I cant imagine like my friend, having 3 children and when the last on gets sick is when I find out that my husband is a carrier.
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