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Nairaland Forum / Nairaland / General / Health / The Facts And Myths Of Sickle Cell Disease (57624 Views)
The Facts About Condoms / Misconceptions About People Living With Sickle Cell Disease / Inspirational Tweets Of People Living With Sickle-Cell Disease. (2) (3) (4)
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Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 2:12pm On Oct 31, 2012 |
patrick2:Patrick, am sorry that my response is a bit late. I just got back from an official journey. 1) I am male 2) i started using cellod-s from July/August of this year. Like I said I got the info about the drug, from here NL and the website blink provided. 3) Even before I started using the drug, I rarely have crisis. I was using another herbal medicine called DIOSCOVITE. It's a clear colorless liquid like water. I do combine it with my monthly malaria preventive. 4) Since I started taking Cellod-s, I have stopped taking any other medication. But, I still do take a lot of water everyday. Apart from headache, I have not had any problem. In my position (as a lay man, I believe cellod-s is curative. But I can't prove that ). 5) To the best of my knowledge, I have not noticed any side effect. And like I said earlier, the EFFECT OF WATER CANNOT BE OVEREMPHASISED. A lot of water can do wonders, believe me. Your brother is just a couple of years older than me. A little reading and research can do sicklers a world of good. Awareness is very important, spread it. |
Re: The Facts And Myths Of Sickle Cell Disease by patrick2(m): 2:35pm On Oct 31, 2012 |
Abali1: Many thanks for the education. Information is powerfull. I will hit the ground and start running right away. 1 Like |
Re: The Facts And Myths Of Sickle Cell Disease by UnimkeAk(m): 4:13pm On Oct 31, 2012 |
[s][/s]A know of some facts about SCD, being a suffer my self and I have also had of some myths concerning SCD. I will like others to add the fact and myth the also know or have heared of. Thank You. FACTS: SCD, is a blood disease. It is inherited from from the HB s genes of both parents.(so it's both parents that should share the blame game, if any) SCD crisis occurs when you have a mutation of the red blood cells(the doctors and lab scientists should explain better Crisis is not always painful ,but it can also be extreemly painful (you wouldn't wish your enemies that can of pain) In summation, this is a LOUSY WRITE UP. |
Re: The Facts And Myths Of Sickle Cell Disease by Gracious10: 4:35pm On Oct 31, 2012 |
Nice thread. Love it! |
Re: The Facts And Myths Of Sickle Cell Disease by shadrach77: 4:36pm On Oct 31, 2012 |
Abali1: When I got to the University, I was already armed with enough info and experiences regarding SCA. I have also gotten to understand my system in a very unique way. ( Parents and Loved ones of SS persons, this is very necessary)you are fortunate to have God on your side and to have good parents but stop toying with fate |
Re: The Facts And Myths Of Sickle Cell Disease by debojyde(m): 4:43pm On Oct 31, 2012 |
Techwriter: I don't know whether these are facts or myth but when I sought friends advice on whether to marry a fellow AS. One told me that the possibility of giving birth to a sickler is from my 3rd baby. That I can actually stop at two and be safe. I also heard in my teenage years that ones an SS gets to 30, the symptoms ceasing and he can't die from the condition. Is that true? It's a thing of probability. The simplest way to explain it to you is that if ur genotype is AS and ur wife's genotype is AS,each child u have as a 1 in 4 (25%) chance of ending up with a genotype that is SS. ...... U could have 20 children and they would all be SS or U could have 20 children and none of them will be SS. But each child u have as a 25% chane of beeping an SS and 25% chance is quite high. I know parents who are both AS and none of their 5 kids are SS. ( They are either AA or AS). . I also know a family whose parents are both AS and all 3 kids carry the SS genotype. |
Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 4:46pm On Oct 31, 2012 |
Unimke_Ak: [s][/s]A know of some facts about SCD, being a suffer my self and I have also had of some myths concerning SCD. I will like others to add the fact and myth the also know or have heared of. Thank You. Thank you Sir, for stating your OPINION. |
Re: The Facts And Myths Of Sickle Cell Disease by betrani(m): 4:47pm On Oct 31, 2012 |
I now appreciate GOD more than ever before! I ve read comments life encounters as well as experiences! Some close to mine others no way near mine and all not so striking like my encounters and experiences! I ve been in! Not a word of my anguish here so that I don't get traumatized again and againd and again! I appreciate GOD is all I would say! The last major crisis I had in my life was in 2010! I would have become history long ago but GOD made sure I wasn't a burial candidate! I'm 30 nw! I know I have been careless with my medication but GOD is still merciful and protective! I do things that most normal people can't I sometimes feel normal with those things! But d truth remains that I'm not as strong as my AA counterparts but I still lead a normal life! From this minute on! I'm going religiously back to my medication with the trut in mind that I'm not like normal people! I ve seen unspeakable pain! But to GOD be the glory! |
Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 4:54pm On Oct 31, 2012 |
@betrani, God in His wisdom created each and every one of us in a Unique way. You are a Warrior and a Survivor, don't let anyone tell you otherwise. Stick to your medications and if you want, you can join those of us taking cellod-s. The drug has been very useful. |
Re: The Facts And Myths Of Sickle Cell Disease by Nobody: 4:58pm On Oct 31, 2012 |
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Re: The Facts And Myths Of Sickle Cell Disease by patrick2(m): 4:59pm On Oct 31, 2012 |
debojyde: How do you explain the case of a woman with 3 kids from the first husband and another 3 kids from a second husband (the brother of the dead husband as permitted by tradition) making a total of 6 kids. 1 kid from each of the husband (2 kids)are SS??. The other 4 kids are not... |
Re: The Facts And Myths Of Sickle Cell Disease by Gracious10: 4:59pm On Oct 31, 2012 |
debojyde: Not everyone is that lucky. My class mate had 7 siblings and all 6 of them were SS and died 2 years apart. She is the only AS. The eldest Brother was the last to die, he was 46 when he died the most painful death I have ever seen. You can imagine the mothers pain. Don't gamble with ur life! |
Re: The Facts And Myths Of Sickle Cell Disease by debojyde(m): 5:05pm On Oct 31, 2012 |
nysot: This is misinformation...... Please read my explanation above |
Re: The Facts And Myths Of Sickle Cell Disease by amarush(f): 5:11pm On Oct 31, 2012 |
Me and my husband are both AS. We found out i was AS after i got preganant as part of my antenatel care in hospital. Hubby had been tested in naija and was told he was AA, but the hospital wanted to test him also, apparently if you are from asia or africa they will retest you as they have come across people who have been misdiagnosed. Anyway, hubby was tested and he was also AS, he was sooooooo shocked as tested as a teen and always belived he was AA. We have two kids, the first is AA (3 years old) and the second is AS (7 months old). btw his older sister was tested in naija and told she was AA, she was retested over here (UK) and is infact AS, luckily her husband is AA. They were both tested a number of years ago and i hope that the procedures have tightned up. Misdiagnosis is no joke. 1 Like |
Re: The Facts And Myths Of Sickle Cell Disease by debojyde(m): 5:12pm On Oct 31, 2012 |
patrick2: Easy. The woman is obviously AS and both brothers she married are AS. Like my explanation above, the probability comes into play with each child(25%) and has nothing to do with the total number of children. Two AS couple could have all their children as SS or none as SS or some as SS. THE NUMBER OF CHILDREN DOES NOT MATTER. WHAT MATTERS IS THAT EACH CHILD OF TWO AS COUPLES HAS A 1 IN 4 CHANCE ( 25%) CHANCE OF BEING BORN WITH THE SS GENOTYPE. |
Re: The Facts And Myths Of Sickle Cell Disease by olu77emi: 5:12pm On Oct 31, 2012 |
@Abali Thanks for the 'hands-on experience' sharing, Do you have any information on this drug "Nicostan"; if you do how effective is it, also what is your suggestion for Children under 7yrs SS Management using the following drugs 1. Sunday-Sunday Medicine (Anti-Malaria Drug) 2. Folic Acid and Thanks |
Re: The Facts And Myths Of Sickle Cell Disease by TCD: 5:16pm On Oct 31, 2012 |
Some people don't like themselves o. A drug is still in the phase of "clinical" trials and somebody here is ranting and crying for doctors to start prescribing it. Do you know what a clinical trial is? You have in effect turned yourself into a guinea pig and you want a doctor who patients trust to safeguard their health to start prescribing unproven and uncertified medications that could potentially harm them. Quick advice, there is a reason why even in the USA FDA approval for a new drug takes over 10 years. It has to have gone through studies to certify safety, efficacy, effects (long term and short term) and dosing. If you like keep playing guinea pig with your life. Because you feel great now you think the drug "has no side effect". When your liver starts failing in 5 years time or tumour pops up somewhere na then eye go clear you or you start producing children with two heads. Google thalidomide and read up on its wide use and circumstances leading to its withdrawal then you'll understand why protocols have been put in place for drug approval. 2 Likes |
Re: The Facts And Myths Of Sickle Cell Disease by debojyde(m): 5:20pm On Oct 31, 2012 |
amarush: Me and my husband are both AS. We found out i was AS after i got preganant as part of my antenatel care in hospital. Hubby had been tested in naija and was told he was AA, but the hospital wanted to test him also, apparently if you are from asia or africa they will retest you as they have come across people who have been misdiagnosed. Anyway, hubby was tested and he was also AS, he was sooooooo shocked as tested as a teen and always belived he was AA. We have two kids, the first is AA (3 years old) and the second is AS (7 months old). An addendum to my explanation above is that Each child of an AS couple has a 2 in 4 (50%) chance of being born with genotype AS and 1 in 4 (25%) chance of being born with a genotype AA. Again I must reiterate, the number of children an AS couple has does not have anything to do with this calculations. That being said 25% chance is quite high so AS couples should avoid getting married if they can |
Re: The Facts And Myths Of Sickle Cell Disease by Sekso(m): 5:21pm On Oct 31, 2012 |
Can a sickle celler cope with HIV? This question suddenly dropped on my mind! I know some people may just be in this mess right now. If "abai" could afford living a bohemian lifestyle in the university with his health status am sure some others in likely state may add women to the recklessness ("abai" did u?)! Doctors in the house kind think out the implication of this extremity! A SCA sufferer doubling as a HIV victim! |
Re: The Facts And Myths Of Sickle Cell Disease by superior1: 5:23pm On Oct 31, 2012 |
I will like to confirm this, a colleague told me there is a way doctors can determine the genotype of a child during early pregnancy stage. |
Re: The Facts And Myths Of Sickle Cell Disease by Nobody: 5:29pm On Oct 31, 2012 |
debojyde:stop propagating this nonsense. Will you give a guarantee that your scenario will always work? |
Re: The Facts And Myths Of Sickle Cell Disease by kpozite(m): 5:32pm On Oct 31, 2012 |
Abali1:SCD persons have higher resistance to malaria than AS and AA. i.e. theirs is mild |
Re: The Facts And Myths Of Sickle Cell Disease by flexyonline: 5:33pm On Oct 31, 2012 |
I want to correct this fallacy going on here that according to genetics, two AS parents will give birth to their children in a certain order i.e. AA, AS, AS & SS. THIS IS TOTALLY FALSE!! Each birth for two AS parents is mutually exclusive form others i.e. the genotype of one child has absolutely no bearing on what the genotype of any other child can be. The probability plays out exclusively in each birth independently meaning that the chance of two AS parents having an SS child is 1/4 or inversely the probability of not having an SS child is 3/4. If the parents are lucky and have even five children, their luck may play out in the 3/4 probability and none of their children will be SS. However, the dangers lies in where in each roll of the dice (birth), their luck plays out the 1/4 every time they have a child and have all their children being SS. This is a very possible scenario and is why two AS people are advised not to marry each other. 2 Likes |
Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 6:00pm On Oct 31, 2012 |
apocalypse:[b][quote author=apocalypse] You are simply saying the same thing she said. It is all based on probabilty. |
Re: The Facts And Myths Of Sickle Cell Disease by Nobody: 6:02pm On Oct 31, 2012 |
apocalypse:That is exactly what I said except I used figures and not percentage. (1 out of 4=25%) |
Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 6:06pm On Oct 31, 2012 |
kpozite: Please, I have had this arguement with someone else on another thread. You can read my story in this thread, and I beg you do not mis-inform the public. Malaria attack if not handled well, will result to the death of a SCD person. 1 Like 1 Share |
Re: The Facts And Myths Of Sickle Cell Disease by Nonya: 6:10pm On Oct 31, 2012 |
@ Abali1 and others who are SS Research on a dietary supplement called Jobelyn. I have heard it is good for sickle cell anemia, among others. My mom, who was having serious knee and joint pain discovered it miraculously. Since she has been using it, no pains or complaints anymore. I admire your positivity and drive to find a solution, not only for yourself, but also for the present and future generation. You are right, PITY IS NEVER THE ANSWER. All is well and long life is yours in Jesus name. |
Re: The Facts And Myths Of Sickle Cell Disease by Nobody: 6:13pm On Oct 31, 2012 |
Miles Davies, T-Boz of TLC, Prodigy of Mobb Deep are all examples of people with sickle cell who are celebrities in the US. Keep the faith alive. U guys are strong. |
Re: The Facts And Myths Of Sickle Cell Disease by richiex(m): 6:19pm On Oct 31, 2012 |
Hi Alabi1, was just reading through your post and i believe there are now advanced ways for couples who are both AS/AS to have healthy children. I did my genotype test and was told i was AS and was refered to Manchester genetics for help and they actually had some advice for me. They recommended IVF, called (gene selection) for the unborn and also bone marrow transplant for the child already born as well. Also, my friend whose baby is just three took his daughter to India for a bone marrow transplant and as we speak, her bone marrows now produce normal blood cells rather than the deficient sickle shaped one, she plays and runs like a normal child. And oh!, i'm still single. |
Re: The Facts And Myths Of Sickle Cell Disease by Nobody: 6:21pm On Oct 31, 2012 |
richie-x:Not everyone is open to the option of IVF because of how expensive it is. |
Re: The Facts And Myths Of Sickle Cell Disease by Gracious10: 6:21pm On Oct 31, 2012 |
Abali1: I concur! |
Re: The Facts And Myths Of Sickle Cell Disease by friedrice1: 6:34pm On Oct 31, 2012 |
Gracious10:Malaria not properly handled can kill anybody, whether AA or BB |
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