Abali1:
Be strong.

thanks

sweetrie: Had to come get motivation from this thread as I was feeling down. Thanks warriors!

Its well with you dear.

contra:

Its well with you dear.

thanks. longest time. How are u? Lost ur email

Hi,my sister who is AC is planning to wed a guy who is AS by next year,my dad has voiced his reservations about d arrangement(i'm nt sure its the best match either).pls can anyone say how dangerous this would be on their offsprings?i've done the crossing myself and SC is the most extreme case.do they suffer crises too?if yes,how often?

ssultana: Hi,my sister who is AC is planning to wed a guy who is AS by next year,my dad has voiced his reservations about d arrangement(i'm nt sure its the best match either).pls can anyone say how dangerous this would be on their offsprings?i've done the crossing myself and SC is the most extreme case.do they suffer crises too?if yes,how often?

ssultana,
Please go through my threads, and you will realise that there is little difference between SS, SC, Sickle- Beta etc. It's a good thing you have done the crossing and know that the extreme case can be SC.
God Forbid it If you sister has a HbSC child, she will understand that Sickle Cell is Sickle Cell no matter the variance and text book theories.
NB
I have Hb SC, when the painful episodes (AKA Crisis) comes then you will really wish you didn't have to suffer for no fault of yours.
Goodluck to your sister and her intended.

Please I have some things bothering my mind that I want to share and will need peoples input. I dont know if I am puting it the right way as not to offend anyone. I am sorry in advance.

1. Why is it that when a person with SS disorder dies even at older age, it seem to be attributed to the fact that he or she has the SS gene whereas you still have AA and AS that die at younger age and in similar circumstances. I had a friend that was AA and died at 29. He came out of the house in the morning bought some grocceries and back to his house and that was his end. If he had SS people will tend to tie his death to it and for me it puts fears in the mind of Warriors unfaily. I also have a friend who is SC but living life and healthier than AA and AS.

2. It seems that discouraging marriage union as a result of 'incompatible' genotype is only in Nigeria and by Nigerians. Infact every article you read online against AS/AS marriage is by Nigerians and it is Nigerians that tend to put the blame of SS offsprings to the parents thereby removing the power to create man from God. Does it have to do with the economy or poverty? Some SS are far more productive and contribute to the society more than the AS and AA people. In the UK most adults dont even know what is genotype and it is never a factor in marriage same as in the US.

The good news I have is that with breakthroughs and advances in various clinics and laboratories, there will definitely be a permanent, safe and affordable cure for this disorder within the next two years. Infact a clinical trial begins early next year for the prenatal cure where the baby is cured in the womb before birth. As the transfer of HIV virus from parents to unborn child is now almost a thing of the past, so I believe this SS disorder will become too. Greetings to all the Warriors.

Tranquill: Please I have some things bothering me that I want to share and will need peoples input. I dont know if I am puting it the right way as not to offend anyone. I am sorry in advance.

1. Why is it that when a person with SS disorder dies even at older age, it seem to be attributed to the fact that he or she has the SS gene whereas you still have AA and AS that die at younger age and in similar circumstances. I had a friend that was AA and died at 29. He came out of the house in the morning bought some grocerries and back to his house and that was his end. If he had SS people will tend to tie his death to it and for me it puts fears in the mind of Warriors unfaily. I also have a friend who is SC but living life and healthier than AA and AS.

2. It seems that discouraging marriage union as a result of 'incompatible' genotype is only in Nigeria and by Nigerians. Infact every article you read online against AS/AS marriage is by Nigerians and it is Nigerians that tend to put the blame of SS offsprings to the parents thereby removing the power to create man from God. Does it have to do with the economy or poverty? Some SS are far more productive and contribute to the society more than the AS and AA people. In the UK most adults dont even know what is genotype and it is never a factor in marriage same as in the US.

The good news I have is that with breakthroughs and advances in various clinics and laboratories, there will definitely be a permanent, safe and affordablw cure for this disorder within the next two years. Infact a clinical trial begins early next year for the prenatal cure. As the transfer of HIV virus from parents to unborn child is now almost a thing of the past, so I beleive this SS disorder will become too. Greetings to all the Warriors.

My dear, your questions are in order. And I don't feel you are offending anyone.
Number 1 question: I voiced out your concern during the time Buhari's daughter died. I questioned the people who are attributing her death to Sickle Cell Anaemia. If my memory does not fail me, she died either during child birth or after child birth. (I can be sure now). But I know that she already had children and was over forty years of age.
I gather that 45 years is the average mortality age in Nigeria. So, must every death of a Warrior be attributed to SCD?
2).
In your second observation, I must clear the air by saying that those who are conversant with Sickle Cell and opposing AS/AS marrital union are not trying to play God. No.
Rather why some of us oppose this kind of union is because when these couples get married and produce a SS, they have without knowing it (or knowing it) had a child who may likely suffer untold pains for the rest of his or her life. (Tranquil, it is not right). The SS child goes through Physical and emotional pains and s/he also bears the stigma of being called or known as a Sickler. But bear it in mind that the child has no choice in being born a SS.
Yes, awareness is gradually being created and people are getting to know more about Genotype and SCD. But how many Nigerians will want to have their Sons or Daughters or Nephew or Nieces marry a "SICKLER". But like you rightly pointed out, we are healthier and stronger and more productive than some AA or AS.
NB
The campaign is to eradicate Sickle Cell from Africa and other places where this kind of genotype is found. Just like Cancer and HIV campaign we want it eradicted. Also like HIV/AIDS campaign, it is far better to prevent it than to have a SS and then start praying to God that scientists should hurry and find a cure.
Already, there is a cure for SS. But it is not easily affordable to the average family. A bone marrow transplant costs about N2.5milion. If a family has about two or three SS persons, will they be willing to shell out N5 milion or N7.5milion for a transplant. Even if they are willing, won't it make them to regret ever taking the decision to get married in the first place? Will their Love still wax stronger when they see their child lying sick at the hospital in pains knowing fully well that it was all their fault and no fault of that child?
Tranquil think about all these and give me a justifiable reason why any AS/AS intending couples will willingly want to put their God to the test.

Abali1:
My dear, your questions are in order. And I don't feel you are offending anyone.
Number 1 question: I voiced out your concern during the time Buhari's daughter died. I questioned the people who are attributing her death to Sickle Cell Anaemia. If my memory does not fail me, she died either during child birth or after child birth. (I can be sure now). But I know that she already had children and was over forty years of age.
I gather that 45 years is the average mortality age in Nigeria. So, must every death of a Warrior be attributed to SCD?
2).
In your second observation, I must clear the air by saying that those who are conversant with Sickle Cell and opposing AS/AS marrital union are not trying to play God. No.
Rather why some of us oppose this kind of union is because when these couples get married and produce a SS, they have without knowing it (or knowing it) had a child who may likely suffer untold pains for the rest of his or her life. (Tranquil, it is not right). The SS child goes through Physical and emotional pains and s/he also bears the stigma of being called or known as a Sickler. But bear it in mind that the child has no choice in being born a SS.
Yes, awareness is gradually being created and people are getting to know more about Genotype and SCD. But how many Nigerians will want to have their Sons or Daughters or Nephew or Nieces marry a "SICKLER". But like you rightly pointed out, we are healthier and stronger and more productive than some AA or AS.
NB
The campaign is to eradicate Sickle Cell from Africa and other places where this kind of genotype is found. Just like Cancer and HIV campaign we want it eradicted. Also like HIV/AIDS campaign, it is far better to prevent it than to have a SS and then start praying to God that scientists should hurry and find a cure.
Already, there is a cure for SS. But it is not easily affordable to the average family. A bone marrow transplant costs about N2.5milion. If a family has about two or three SS persons, will they be willing to shell out N5 milion or N7.5milion for a transplant. Even if they are willing, won't it make them to regret ever taking the decision to get married in the first place? Will their Love still wax stronger when they see their child lying sick at the hospital in pains knowing fully well that it was all their fault and no fault of that child?
Tranquil think about all these and give me a justifiable reason why any AS/AS intending couples will willingly want to put their God to the test.

The question I asked is why is it only in Nigeria and by Nigerians that you hear such things that AS/AS marriage is 'not compatible' or that someone should not marry a 'sickler'. How can you eradicate ss in africa or even other parts of the world through promoting such idea only in Nigeria whereas it is not so elsewhere. Infact it could even be a crime in some societes not to get peolpe married because of genotype. I mean western societies. I feel the problem is more witg the ss awareness campaigners as they succeeded in demonising ss patients and now as/as marriage instead of stressing on the need for early screening, intervention and proper management of patients that will make them live healthy and achieve their god-given potentials. What is the guarantee that children born as aa or as will not suffer one ailment or the other? what is the guarantee that even marriage between the so calked 'compatible' genotypes will even bring forth children? If a man that has ss kid abandons his family, it is attributed to the fact that the wife has ss kid even though lots of men with no ss kid also abandon their families. We have had a governor in this country that is ss. Even Dr Christopher Kolade is an ss among other people that have contributed to the betterment of our society. Go and ask them if they regret being born. Ask people around them if they regret having them. If they were prevented by our own wisdom from being born would they have bcome useful to their family and the society? Wheras we have some AA and AS people that have wrecked havoc on their families and the society. The UK NHS defines ss disease as a genetic disorder that is NEITHER THE FAULT OF THE PARENTS NOR THE CHILD. People especially at risk should not be discouraged from marrying whom they love but to go for early screening to detect a baby with ss disorder and start the various treatments from day one that will allow the child grow up normal. Campaign should also dwell on making the government subsidise the cost of permanent cure as well as support various researches and breakthroughs in finding easier, safer and affordable cure for the disorder.

Tranquill:

The question I asked is why is it only in Nigeria and by Nigerians that you hear such things that AS/AS marriage is 'not compatible' or that someone should not marry a 'sickler'.

I will take on your points one after the other.
.
.
1. You really think and believe that it is only Nigerians that campaign against AS/AS marriage?
No. It is not only Nigerians. Other African campaigners from mainly African countries like Kenya and Uganda also campaign against AS/AS marrital union. At least I have read news Items from these countries relating to sickle cell.
Why, are Western Countries not campaigning against AS/AS marriages?
I believe it's because you rarely see Westerners suffering from this particular genetic disorder. What you will rather see, is a few people (mainly of African dissent) who are sufferers of sickle cell diesease.
Again these Sickle Cell people in Western countries rarely experience complications or crisis as often as we here in Nigeria (or Africa). One of the reasons is that Malaria attack is not that rampant in the West.
Tranquill me a favour by joining Sickle Cell Warriors (it's a US based group) on Face Book. Ask some of the questions you are asking on this forum and you will get answers directly from Warriors and Lovers of Warriors based outside the country. Most times the doctors over there don't even understand what these people are going through. And they are often tagged "Junkies". Because they often want more pain drugs that will relieve their pains and they go to the dispencary as often as possible.
The campaign of Warriors in the West have to do more with, Health care givers understanding their unique situation.

Tranquill:

How can you eradicate ss in africa or even other parts of the world through promoting such idea only in Nigeria whereas it is not so elsewhere. Infact it could even be a crime in some societes not to get peolpe married because of genotype. I mean western societies.

Nigeria is not the only country promoting such ideas. Moreover Nigeria is considered to be the 'World Capital of Sickle Cell Disease', by the sheer fact that Nigeria with it's large population has the highest number of people with Sickle Cell Genetic Disorder. (I stand to be Corrected). If you do not promote the idea of eradicating SS by campaigning against AS/AS marrital union, I wonder how else we are going to eradicate SS.
The same way Abstinence and the use of condoms is being advocated as a way of reducing if not eradicating HIV/AIDS, is the same we are campaigning against the idea of AS/AS, AS/SS, SS/SS marrital union
.
.
The idea of the West seeing the campaign against AS/AS marrital union as a crime is laughable. So, I will advice that you remove it from your mind.

Tranquill:

I feel the problem is more with the ss awareness campaigners as they succeeded in demonising ss patients and now as/as marriage instead of stressing on the need for early screening, intervention and proper management of patients that will make them live healthy and achieve their god-given potentials.

.
.Tranquill, if you feel the campaigners are demonising ss patients just know that most of the campigners against AS/AS marrital union are SS people. So you think I will allow emotions to rule over common sense just because people will feel that SS is being demonised?
.
.
Early screeeening, Intervention, and proper managment of patients.
.
Really, you think that the above is better than asking adults who are AS/AS NOT TO GO INTO A MARRITAL UNION. So you want to encourage people to go ahead and have more SS children who may not see their 10th birthday? Do you know that it is more difficult to manage a child who is SS than an adult who is SS?
A child of 0-10 years cannot fully express himself when he is going through Painful Episodes, unlike an adult who will sense the oncoming of painful episodes days before it even started.
Please, SAY NO TO AS/AS MARRIAGES. It is not about wishes or emotions or how much the parents love each other. When faced with reality of caring for a SS child you will understand what I am saying.

Tranquill:



What is the guarantee that children born as aa or as will not suffer one ailment or the other? what is the guarantee that even marriage between the so calked 'compatible' genotypes will even bring forth children? If a man that has ss kid abandons his family, it is attributed to the fact that the wife has ss kid even though lots of men with no ss kid also abandon their families.

There is no GUARANTEE and does not make it right for AS/AS to knowingly go into marriage and start WISHING AND PRAYING that they don't give birth to SS child.

.
A man who will abandon his family will still abandon his family. But why give him a justification to do so?

Tranquill:

We have had a governor in this country that is ss. Even Dr Christopher Kolade is an ss among other people that have contributed to the betterment of our society.

Do you know how many Ahmed Markafi's and Christopher Kolade's that never made it to their 18th Birthdays just because the Sickle cell crisis won the battle.
.
Do you know how many of us survivors that have to push past our stress limit just to prove that we have the capability to deliver on the job? Just because people don't believe we can.
.
I won't be surprised if Dr Kolade also lends his voice in campaigning against AS/AS marrital union.

Tranquill:
The UK NHS defines ss disease as a genetic disorder that is NEITHER THE FAULT OF THE PARENTS NOR THE CHILD. People especially at risk should not be discouraged from marrying whom they love but to go for early screening to detect a baby with ss disorder and start the various treatments from day one that will allow the child grow up normal.

Please, I will like you to give me a reference of where you got the bolded. I tried doing a google search and couldn't find anywhere such definition is given that it is not the fault of the Parents, we already know that it is not the fault of the child.
.
Tranquill, are you trying to say that if two AS/AS adult knowingly decides to go ahead and make babies and it result to the having Sickle Cell, then they can claim that it is no fault of theirs. emphasis is on 'Knowingly decides'.

Tranquill:


Campaign should also dwell on making the government subsidise the cost of permanent cure as well as support various researches and breakthroughs in finding easier, safer and affordable cure for the disorder.

The Campaign also focuses on all you mentioned here. You may not know it, but any little breakthrough in researches about cure for sickle cell or drugs that can help us manage it better spreads like a wild fire among The Warrior communities. Because you don't get to hear about in the media like news related to Cancer or HIV does not mean we don't follow up on researches and advances being made in the medical field concerning Sickle Cell Anaemia.

Hello, this is quite urgent, my sis is a warrior and she been having severe cough catarh, which results for fatigue and nausea.... I gave her ugu juice and milk, then I called my mom later who said I shouldn't give to her, that ugu juice isn't good for her health, it contains iron. Pleasseeee how true is this, and what do I do?

Tswaggs1:
Hello, this is quite urgent, my sis is a warrior and she been having severe cough catarh, which results for fatigue and nausea.... I gave her ugu juice and milk, then I called my mom later who said I shouldn't give to her, that ugu juice isn't good for her health, it contains iron. Pleasseeee how true is this, and what do I do?

Refer to the other thread. Goodluck.

Good day Abali1. How are you doing? Well done for the good works you've doing concerning creating awareness about Sickle cell Disease. The Lord is your strength. Pls can I share some of your posts on my Facebook page, The Survivors? Thanks

fam24:
Good day Abali1. How are you doing? Well done for the good works you've doing concerning creating awareness about Sickle cell Disease. The Lord is your strength. Pls can I share some of your posts on my Facebook page, The Survivors? Thanks

Yes you can.

fam24:
Good day Abali1. How are you doing? Well done for the good works you've doing concerning creating awareness about Sickle cell Disease. The Lord is your strength. Pls can I share some of your posts on my Facebook page, The Survivors? Thanks

I will check it out on FB.
Can't see it on FB. Post a link.
email at abiaaba4@gmail.com

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

I don't know if it's too late to answer this, but I hope it help someone else, if not you, in making their decision.
My dad is actually CC, and I can say he is the strongest person in our house. He has no trait of sickle cell. His major sickness is boils, a sign of infection. No pain, no crisis. But medically, it is believed that he is just lucky that people with genotype CC, apart from been sickle cell carrier, are also sickle cell patient. His case may just be 1 in 100.

I advise you see a hematologist for medical advice, not just any doctor.

My take is that if you are not AA, then you must marry AA.

Wish you all the best in any decision you made.

fam24:


I don't know if it's too late to answer this, but I hope it help someone else, if not you, in making their decision.
My dad is actually CC, and I can say he is the strongest person in our house. He has no trait of sickle cell. His major sickness is boils, a sign of infection. No pain, no crisis. But medically, it is believed that he is just lucky that people with genotype CC, apart from been sickle cell carrier, are also sickle cell patient. His case may just be 1 in 100.

I advise you see a hematologist for medical advice, not just any doctor.

My take is that if you are not AA, then you must marry AA.

Wish you all the best in any decision you made.

Good response. CC is not that good. And its advised that a CC marries AA .

I think this might help....Sickle Cell Foundation of Nigeria is a cool place.
They've got labs and offer clinical services there too. You can run tests, treat leg ulcer, and get genetic advice from them.
Check out the facebook page here -

https://www.facebook.com/sicklecellfoundation/

My friend's son uses a herbal supplement called Immunozin. He now hardly has any crisis or pains. Previously, he used to have 2 crisis every month.