The Facts And Myths Of Sickle Cell Disease - Health - Nairaland
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| The Facts And Myths Of Sickle Cell Disease by Abali1(m): 2:47pm On Oct 29, 2012 |
My dear people of NL, am creating this thread because Genotype issues has affected and still affecting relationships. I am not a medical doctor(wish I am one) and am not really science inclined, but I read a lot. Moreover the issue of SICKLE CELL DISEASE (SCD) is one dear to my heart. As you all might have noticed, threads about genotype incompatibility is sprouting here and there on NL. And sometimes the opinion of people here on NL can't really be crazy. From the practical ones who see Life as experimental(that is, science proven or Doctors opinion) to the zealots who believe that religion is the be all and end all. 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) Some, not all SCD persons have the yellowing of the eyes(probably due to jaundice) and they also have a kind of stunted growth(also not all SCD people) SCD is MANAGEABLE. And DEFINITELY NOT a Terminal disease. There is more risk of losing a SCD person when they are still children( because they yet to understand their body system and take adequate care of themselves) With good nutrition and religiously adhering to their medications, SCD persons can live to an old age.( heard of woman who is her 80's and also know of my mum's friend who should be in her late 60's, if not early 70's). MYTHS SCD persons will die before or by their 15, or 18, or 21 or 27 or 30. SCD persons cannot bear children( especially the males. A lie from the pit of Hell. My lecturer in school already had 3 children before I graduated) SCD persons don't have malaria ( please no allow mosquitoes near anybody whey get SCD) And a whole lot of other things. Please my good people of NL, this is not an exhaustive list. you can add your own. Thank you. NOTE: I am AGAINST AS/AS PARTNERS GOING INTO MARRIAGE. Do the right thing and let's all join hands and see that SCD stops with our generations. Yes GOD IS ALIVE AND WE SHOULD TRUST HIM. BUT DO NOT GO ABOUT TEMPTING FATE. 11 Likes |
| Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 3:13pm On Oct 29, 2012 |
We need to keep this thread alive. Cos someone will open another thread tomorrow asking if to go ahead with AS/AS marriage. Or an AA will come on NL with a story seeking for advice whether to marry a SS or not, cos s/he heard that they can't have children or that they will die soon. Also I will really like to gauge the opinion of readers about dating or marrying a SS person. Especially those that are AA OR Have siblings who are AA or friends who are AA. Will you encourage the person to marry SS, If they love each other? Your honest opinion is needed. 5 Likes |
| Re: The Facts And Myths Of Sickle Cell Disease by Techwriter: 4:40pm On Oct 29, 2012 |
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? |
| Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 5:04pm On Oct 29, 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?You first question, I will categorise as a myth. This is because determining the Genotype of any baby from an AS/AS partners fall under probability.(Doctors and medical scientist should correct me if am wrong) Determining the genotype of a baby is akin to determining the sex of a baby. It could be the first or second child that will inherit the HB s gene. The second question is equally a myth. Am above 30. But if I should be careless with my health now, I will only have myself to blame. My dear if you are thinking of marrying an AS and you are equally AS, i will only advice that you shelve that plan. Why tempt FATE? 4 Likes |
| Re: The Facts And Myths Of Sickle Cell Disease by Idowuogbo(f): 5:36pm On Oct 29, 2012 |
well done Abail! i likey!!! 1 Like |
| Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 5:37pm On Oct 29, 2012 |
Some maybe wondering how a SS person manages the condition. I will use my experience in Life as a case study. When I really got to appreciate the seriousness of the SCD was when I was about 8 or 9 years old. I had this severe crisis that set my body on a High Fever. This type of Fever is better imagined. The heat from my body was such that when my mum places a wet towel on my forehead, the towel in no time will became warm. She will dip it back in the water and place back on my forehead. After about five minutes the water itself will become warm. After watching me for the night, while praying that I survive the next day.... they (mum and dad) rushed me to a hospital the next day. When we got to the first hospital the nurses on duty actually rejected me, as in they refused to admit me.... their reason is that there was no doctor on duty(it was on a sunday). |
| Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 5:44pm On Oct 29, 2012 |
my dad being a practical man, knew that the same treatment may repeat itself. Started thinking of doctors he may know within the city. Finally, he remembered one that was his junior in high school. When we got to the hospital a 3 storey building I couldn't climb as I didn't have any energy left. My mum has to carry me on her back. It was in that hospital that Haemoglobin syrup was recommended and a dosage of malaria preventive tablets every two weeks.(I have stopped taking these). |
| Re: The Facts And Myths Of Sickle Cell Disease by Idowuogbo(f): 5:45pm On Oct 29, 2012 |
hmmmm.. wow! woW! |
| Re: The Facts And Myths Of Sickle Cell Disease by Nobody: 5:48pm On Oct 29, 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?No, that is a pure myth. Like Abali1 said, that is like trying to determine the sex of an unborn child. Out of every four children that an AS/AS couple will have, the probability of having a SS child is one. But there is no particular order in which a SS child is born, he can be the first, second or last. Also, an AS/AS couple can have kids and not one will have the SS genotype. All these are random effects. Really, the best way out of it is not marrying a fellow AS. |
| Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 6:14pm On Oct 29, 2012 |
Fast forward to my secondary school days. I bless my dad wherever he may be ( he passed on in my final year in the secondary school). My dad did not make me feel llike a sickler on bit. When I chose a boarding school, he did not object. Unlike my mum that wanted me to be where she can always have her eyes on me (women and fear ehh). I went to a boarding school and mingled with other children, from diverse background. But by then I already know that I cannot do everything all the other children were doing. Even if I have to engage in a manual labour(especially cutting grass) I will always find a way to rest when am exhausted. Throught out my JS 1, know one really knew that I have SCA. But then in my JS 2 third term, I had another very bad crisis. This time around, one of the parents that came visiting unofficially( cos it wasn't our visiting day) had to take me home. But the man just dey fear say make I no go kpeme for him car, cos I slept through out the whole journey which lasted more than 2hours. 1 Like |
| Re: The Facts And Myths Of Sickle Cell Disease by Idowuogbo(f): 6:22pm On Oct 29, 2012 |
ItsModella:bless u! i read his comment and i was like wtf!!! like seriously?? joker! |
| Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 6:25pm On Oct 29, 2012 |
It was after this crisis, that I really knew that God is indeed a WISDOM. Before the crisis, our promotional exam was fast approaching. And I really stressed myself reading (cos I wanted to impress my dad). You won't believe that I came back the weekend before the exam day, after staying in hospital for almost 2 or 3 weeks and I passed and got promoted. So, when the man dropped me at my mum's office the woman just prepared and rushed me to the hospital. The same hospital I stated above. The doctor ran a couple of test and the result came back....MALARIA, TYPHOID AND PNEUMONIA.(i hope that is the spelling) I don't know if it was the typoid, but after each blood transfusion my blood level will go up and before you know it has dried up again. This time around, my doctor was as confused as anyone. But, to God be the Glory I pulled through that one. |
| Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 6:41pm On Oct 29, 2012 |
God sustained me through my growing up years, NO DOUBT. So what effort did my parents and the doctor (I had one doctor, though he is no longer in the country) take to make things right. My parents did not slack in reminding me about taking my medications. The Igbo phrase " i nou la ogwu gi" became an anthem to everyone in my compound. I hate eating beans, unripe plantain, even fish while growing up. I hate vegetable soup, I hate drinking vegetable water or olugbu water( that is bitter leaf). But my didn't relent. If it means bribing me, she will do it. Also with the benefit of hindsight, I will say the FIOFIO I ate in school like 5 or more times a week really helped (even though I hated fiofio then). Almost all the types of food that was necessary for me, I hated them then. But now, I have no choice than to feed on those nutricious food types I hated while growing up. 3 Likes |
| Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 7:06pm On Oct 29, 2012 |
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) In my case, I can sense a crisis way before it actually becomes something else. My school was very far away from my mum this time. So, I was left to my own vices. With that arrogant sense that comes upon CHAMPIONS every now and then, I decided to test Fate in different ways. I took to drinking alchohol with my buddies and also took up smoking (these are very deadly habit for any sickler to indulge in). Though I didn't forget taking my medications, but it wasn't as regular as it used to be. In my year two, I had a totally different kind of crisis. This time around the pain was on my leg, precisely the soles of my feet. I was rushed home (it was during one of those times that police killed a student and I followed others to protest the killing by marching on the road, we were heading to Alausa). My sister took me to a hospital and the doctors said I had tumours growing there, that my leg will be amputated. I cried and begged God not to allow me go through this one. The Doctors said I was going to wear a POP for a month, that if it doesn't improve then the leg will be amputated. After loosening the POP at the end of the month, I was asked to walk around. I felt some pain, but I decided that I will rather live with the pain than allow anybody to cut off my leg. And at the end, my Faith and Trust in God triumphed. 2 Likes |
| Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 7:21pm On Oct 29, 2012 |
Presently, I use Cellod-s to manage the SCD. I have also stopped taking all other medications. I now feed on nutricious food types. I have included fiofio (pigeon pea) on my diet. Vegetable soups are now my favourites (lols, just joking). I use fish in almost all my meals now. I take yogort and soy milk every now and then. For almost 18months now, I have not neared a hospital. Except visiting other people who are sick. I make sure I take a lot of water. (I used that even when I was small, so no biggie). Moreover am constantly on the net searching for remedies, that can help alleviate the SCD sufferings. Above all my TRUST IN GOD IS UNSHAKEABLE. I believe the good work He has started in me will come fruition. 13 Likes |
| Re: The Facts And Myths Of Sickle Cell Disease by Idowuogbo(f): 7:21pm On Oct 29, 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) damn!!!!!!  |
| Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 7:32pm On Oct 29, 2012 |
Idowuogbo: I guess you now understand that I wasn't really being harsh on the lady on the other thread. If every SS person should come out and tell his or her story, am sure nobody will really see them as normal beings. But the truth is that, we are all normal. When you wrestle with death and refuse to give up, you will find it frustrating when mere mortals tell you that sicklers can't do this or that. I have to tell this story, because I know that many AS/AS intending spouses will not really appreciate what they are about entering. Also to tell the "DOUBTING THOMASES" that a sickler is a survivor and can withstand more painful things in Life than your average "healthy persons". We tolorate a lot of bulls, just so that society will not use our conditions as an excuse. 10 Likes |
| Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 9:08pm On Oct 29, 2012 |
Apart from bone marrow transplant there are no other known cure for SCD. The SCD is the "black man's scourge" I doubt if the western scientists are really keen in researching to find a cure for. And most medical researchers will rather focus in, HIV/AIDS; CANCER; etc. So SCD person will have to do themselves a favour by reading up a lot of literature that will help them manage the disease and live a healthy and normal Life. There are a lot of herbs and natural food stuff that can really help someone living with SCA. 4 Likes |
| Re: The Facts And Myths Of Sickle Cell Disease by Idowuogbo(f): 10:14pm On Oct 29, 2012 |
Abali1:Abail!! I lurveeee ur approach, all I can is... U a fighter.keep d updates coming, am a fan already.*winks* 1 Like |
| Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 5:50am On Oct 30, 2012 |
Thanks Idowuogbo. Most children with Sickle cell die at the age of two, due mainly to lack of knowledge about the disease and also given that those children cannot really express themselves coherently. Awareness on the scourge of SCD is really important in our society. If am correct, as far back as 1910 SCD has been discovered by medical science. But so many people, even in the West know next to nothing about SCD. WHY? I can only guess; because the West and "the healthy" blacks could care less. Mind you, this so called "discovery" in 1910 occured not in Africa but in the United States. Africa and people of African descent has been living with SCD for at least 5000 years (this is not an exageration, do some readings). 4 Likes 1 Share |
| Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 6:47am On Oct 30, 2012 |
please, the doctors and other medical scientists in the house should correct me anywhere I go wrong. |
| Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 7:04am On Oct 30, 2012 |
According to medical science a SCD person's Red Blood Cell (RBC) has the shape of a sickle (i.e. where the disease derives it's name). The red cells are the oxygen transporters of the body. The trouble is that people with SCD often have their RBC sickled when deprived of oxygen. In 1949 medical science came to the conclusion that SCD was inherited and that people with sickle trait were heterozygous (carriers or AS) for the gene, whereas people with the disease were homozygous (i.e., had a double dose of the gene or SS). 1 Like |
| Re: The Facts And Myths Of Sickle Cell Disease by Dreystar(f): 7:06am On Oct 30, 2012 |
Taking lot of fluid(water) is very crucial for people with SCD, eating "fresh" fruits and vegetables is important too, cut down on sugary things(if possible-dont take it at all! ) |
| Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 7:25am On Oct 30, 2012 |
Thanks Dreystar, I need the Warrior to make this thread lively. A lot of people out of ignorance will do more harm to themselves and their loved one. SCD is real and people with real life experiences should tell their stories. The Doctors opinion is just what it is.... An opinion (yes with theories). If you already have a child with SCD don't give up on him/her cos there is a whole lot of beautiful life experiences awaiting that child. BUT, if you are AS/AS and you considering getting married.... please am on my knees don't. WHY TEMPT FATE? 1 Like |
| Re: The Facts And Myths Of Sickle Cell Disease by Dreystar(f): 7:40am On Oct 30, 2012 |
Abali1: The Doctors opinion is just what it is.... An opinion (yes with theories). If you already have a child with SCD don't give up on him/her cos there is a whole lot of beautiful life experiences awaiting that child. Parent with SCD child(ren) should not give up on them. They are unique in their own special way.There is no other person in all the world who is exactly like that child! They are different and special. Parents shouldn't stop encouraging and motivating them to follow their dreams. They are human like everyone else!  6 Likes |
| Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 8:32am On Oct 30, 2012 |
These days the life expectancy of people with SCD is on the increase. It is not uncommon to see people with SCA living well above their mid- 60's (I mentioned my mum's friend above, as a case in point). This can only be attributed to the advances in medical science (credit must also be given to herbal practitioners). Note, these advances do not make SCD any less deadly or less a health issue of great concern. Some people with SCD lead lives that are normal. But others may also be less fortunate and suffer from a variety of complications. I will list some of the complications in my next update. |
| Re: The Facts And Myths Of Sickle Cell Disease by Idowuogbo(f): 8:44am On Oct 30, 2012 |
Morning everyone!! Still reading.... Wow! Amazing thread. 1 Like |
| Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 9:44am On Oct 30, 2012 |
These complications can result in the following conditions: HAND-FOOT SYNDROME: When the small vessels in the hands or feet are blocked, pain & swelling can result, along with fever. This maybe the first symptom of sickle cell anemia in infants. (In my case, I experienced this in my early twenties as I stated above. Thank God my leg was not amputated, by a doctor who thought I had a tumor). FATIGUE; PALENESS & SHORTNESS OF BREATH. All these are symptoms of anemia, or shortage of red blood cells. When any of these become severe a crisis is witnessed. More of the SCD conditions to come. If there is any Warrior viewing this thread, you input will be highly welcomed. |
| Re: The Facts And Myths Of Sickle Cell Disease by Nobody: 9:58am On Oct 30, 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? If you are AS please run away from AS, do not try to console yourself with the hope of not having an SS child first. Forget how much you love your spouse, just forget it because when the sick babies start arriving in no particular order you will regret getting married. |
| Re: The Facts And Myths Of Sickle Cell Disease by Nobody: 10:09am On Oct 30, 2012 |
Abali1: These days the life expectancy of people with SCD is on the increase. It is not uncommon to see people with SCA living well above their mid- 60's (I mentioned my mum's friend above, as a case in point). This can only be attributed to the advances in medical science (credit must also be given to herbal practitioners).The oldest I know should be 83 years now. Herbal practitioners, have gone really far but I believe as far as this disease is concerned Cellod-S is at the fore front. Presently, stage 2 of clinical trials is being done. When it passes, the drug can then be sold to institutions and chemists. Really can't wait for that to happen. Sufferers should be able to walk into any chemist and buy relief. 2 Likes |
| Re: The Facts And Myths Of Sickle Cell Disease by nysot(f): 10:53am On Oct 30, 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? In Genetics, during crossing, the possibility of you giving birth to a sickler is from the fourth child, the first child would be AA, the second and third children would be AS while the fourth would be SS. In reality, this might not happen. I have a friend who is SS and he is the first child. Both parents are AS, they planned to have 3 children with the mindset that 1 would be AA and the other 2 would be AS. But that did not work for them, they had the first and he is SS. So, you can never tell. 2 Likes |
| Re: The Facts And Myths Of Sickle Cell Disease by Abali1(m): 11:35am On Oct 30, 2012 |
Pain that occurs unpredictably in any body organ or joint, wherever the sickled blood cells block oxygen flow to the tissues: The frequency and amount of pain varies. Some may have as many as 15 or even more crises in a year. Others may not even have any or just once in a year. In my case, I hardly have painful crises when I was growing up. Initially my doctor and my family thought I faking it. Most of these crises episodes may require the patient being taken to the hospital and treated with painkillers and intravenous fluids (AKA drip). My dad makes sure I take drips, at least once every two months, whether am sick or not . (that was when I was still growing up). 1 Like |
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