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...


blk2hug Thanks xx blk2hug

P.s Check out his poem at www.good-spirits.co.uk

So what, 18 people can read this and can't even help a sister out...seen...now i understand!!!

@ 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 thatmy cousin'snew born baby has Sickle Cell and quite naturally we are all saddened. I am not clear ifhe hasthe trait or anemia. It is my hope the baby will lead asfull a life as possible if it is indeed the disease. I am sure you are aware of theefforts 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 strongblkrubhead

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 thatboth 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 andthe 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 tomake decisions about children.

sickle cell means to me:being educated and being responsible....realising thatone'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.

@ 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!!!!!! banana.gif

God bless too! xx

@ NyjaBabe - blk2hug

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 andwrite a little piece for her on what "Sickle cell means to me"?

@ NyjaBabe

You are welcome. And to answer your question....I don'treally knowbut I think it is safe to say that neither of them were aware.

I'm glad you made it through the anniversary.

Ashantiniceone.gif

nyjababe

I hope you are coping and that you keep strong.niceone.gif

I too, am very ignorant about sickle cell.

blktypeWhat exactly can we do to help?

@ 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 shit 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

blktypePlaying 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 meanI 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 shouldI expect you to?

You are only thinking of your brother though and its right you should campaign on his behalf - butI ask myself how many other conditions do you know about today, that has no real or potential bearing on your life?confused3

@ 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.

@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

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.