There are certain misconceptions about Sickle Cell Disease and people living with Sickle Cell Disease. These misconception should not be mistaken for the myths about SCD. I will try as much as possible to list and eexplain some of them.

1) The Age Misconception.:.
Many people are of the view that when you get to a certain age as a person living with Sickle Cell, you will stop having pain crisis.
Dear readers, this is not true. Most of us that have lived with this disease and are adults, have learned how to manage ourselves and avoid factors that may trigger off crisis. Also we have learned how to endure and maybe ignore the pain that goes through our bodies often. Because of this, people think that at a certain age in a Warriors life he will automatically outgrow crisis.
It is even unfortunate that some of us warriors have erroneously believed this concept of age, that they neglect their health and, am sorry to say, have paid with their life. Sometimes, you hear of a Warrior who has just finished School(University) and s/he is looking for work or already working and the next thing you hear is that s/he just dropped dead.
Please if you are a health care provider, parents, siblings, relations, friends and well wishers of a person living with sickle cell show them love by often asking them about the state of their health in a loving tone. Believe me, some of us often tend to forget that we have health challenges and just carry on as if "nothing dey happen".

2)The Misconception about doctors and other healthcare knowing exactly what a person living with SCD is going through in a crisis situation.:
This is one misconception that I hope will one day be corrected. My dear readers, if you are not a person living with SCD you can only imagine what warriors go through. But do not assume that you understand it because you are a doctor, a nurse, a pharmacist, a lab scientist etc.
Agreed, doctors and other healthcare givers are professionals who have spent years qualifying for their professions. But unless the doctor is also a Warrior, I don't think s/he will know exactly what warriors are going through. But out of respect for their qualifications, I hope to Trust them enough to imagine what Sickle Cell Patients go through.
I will prefer to hear a doctor/ nurse say, " I can only imagine what you are going through", or "I understand your pains". But please don't tell me, "I know exactly how you feel". With all due respect Mr. Doctor "you don't know how I feel". You don't know "the indiscribable pain racking through my body".

3) Those Living with Sickle Cell Disease are junkies often using their health as an excuse to get a fix.:
This is one of the most annoying misconception about Warriors, and most times it is the Doctors and other healthcare givers that make this conclusions.
For our warrior brothers and sisters in the West, I can only empathise with you. I have read a lot of literature, where a person living with sickle cell disease visits the ER of a hospital only to be viewed as a "Junkie". Ahh ahh. How cruel can people be.
For some of you reading, when painful crisis comes it is better imagined than experienced. I don't know how to explain it, but I will use my experience as an example.
I once had a crisis that was so painful that I couldn't sit, I couldn't stand, I couldn't lie down. Any position I take, It will be as if someone is passing electric current through my body. At a point, I told my cousin to stand on my back. This guy weighs more than me, but I was willing for him to stand on my back to see if the pain can reduce (how foolish ba?)
When we finally made it to a neighbourhood hospital, the nurses asked me how the pain was. All I could utter was, "it feels as if I am pregnant and about to have a baby"....LOL. (do I even know how pregnant women feel, SMH)
Please, doctors in the house much respect. But we sometimes need to take a heavy dose of pain killers or even narcotic related med, just to make the pain to go away. It doesn't make us addicted to these pain meds or dependent on them. If you observe very well, we don't really have a need for them after the crisis.

4) Sickle Cell Affects only Black people..:
I used to have this misconception, but not anymore. Sickle Cell is not a black man's disease. Agreed, majority of people living with sickle cell disease are people of African descent. But there are a number of other nationalities that have people living with sickle cell disease. These includes, the carribeans, Brazillians, Asians, Greeks etc. So, I will advice that we correct the notion that Sickle Cell disease is the Black-man's disease.

5) There is no cure for Sickle Cell Disease.:
There is a cure for sickle Cell disease and that is the Bone Marrow Transplant.
The Bone marrow transplant is the only known cure for sickle cell disease. Though the difficulty in this, is that you have to find a matching donor and that could be placed in a probability of 1 in 1000. But it is sometimes easier to search for a match in one's siblings. That is the sibling of a Sickle cell person may have th same bonee marrow type.
Apart from the bone marrow transplant, sickle cell is a disease that can be well managed and the person living with it can have a normal and fulfilled life. All it takes is for the person, to avoid the factors that normally trigger off crisis. (Maybe I will create a topic on the factors that easily trigger off crisis in my next thred).
Those who have successfully managed this disease have been known to live well past their 60th birthday and above.
NB.
Bone marrow transplant has a number of difficulties; one, being to find a match and a *willing donor*; two, the cost of a transplant is very expensive, above what many people can afford, and transplant is not 100% accurate.
Therefore, managing the SCD still remains a better option.

^^^ at last I can name two persons who have successfully managed this disease. One is an African American (70years or more), the other is a Nigerian (60years or more).
The African American is Judy Gray Johnson; Author of Living With Sickle Cell Disease: The Struggle to Survive.
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The Nigerian is my mum's friend Iheanyi Amuta; Author of Sickle Cell Disease: The Life and Testimony of a Sickler.
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There are many others who are successfully managing this disease and equally pursuing their life's dreams and aspirations. So if you are a parent, sibling or relation out there or you happen to be in a relationship with a warrior brother or sister, you don't need to be afraid or give up hope on them. All you need to do is to show them love and care, and also to challenge them to attain/achieve their lives aspirations and goals.

6) People living with SCD are immune to malaria attack.:
I really don't know if this should be here. But for the purpose of enlightening those that still think Sickle Cell people don't have malaria.
Please be adviced that malaria attack is among the top killers of children and adults who are living with sickle cell disease. I have argued here on NL with some really bright and intelligent individuals who think that because they read it somewhere and because I am not in the medical field, I shouldn't try to mislead the public.
Again, MALARIA IS A KILLER FOR PERSON's LIVING WITH SCD.

Abali1: 4) Sickle Cell Affects only Black people..:
I used to have this misconception, but not anymore. Sickle Cell is not a black man's disease. Agreed, majority of people living with sickle cell disease are people of African dissent. But there are a number of other nationalities that have people living with sickle cell disease. These includes, the carribeans, Brazillians, Asians, Greeks etc. So, I will advice that we correct the notion that Sickle Cell disease is the Black-man's disease.

You are right, I read in an article that exposure to mosquitos is what caused the gene mutation that led to the SS genotype. So any area with anopheles mosquito will definitely have sickle cell.

7) The Calm before the storm.:
From the term above, you will understand that I am talking about that confusion you have as a parent/care-giver of sickle cell person that looks completely healthy, very active, and suddenly relapses into crisis.
You hear things like, "ahh ahh! But this child has been playing all day with his friends; s/he even perticipated in the end of year school activity in their school and danced with other children"; "but s/he has not heard crisis for sometime now, I didn't take it serious when s/he complained about feeling a little feverish" and other such comments.
Mummy, daddy, uncle and aunty, please the time that child needs to be carefully watched over is when s/he is hyper-active.
Believe me exhaustion or even dehydration can lead to sudden and unexpected attack. If you doubt this, ask any survivor/warrior to tell you their childhood experiences. Also remember that your child, like any other child, will always want to do what others are doing.
NB.
I am not asking you to choke him/her to death with care/ or to cage him/her. But be watchful when they are at play. By now most people who have been around people living with Sickle cell should know that most of us are naturally very stubborn, and cannot easily be caged.

Hmmm. I never knew that it could be this serious.
May God continue to give all individuals suffering from SC strenght to endure and courage to conquer this illness

So touching ! I sure can only imagine what you warriors go through. To learn isn't bad anyway. Most of us believe that the only way one get to be a sicker is when both parents are AS , or one is AS , the other SS , or both SS . Is this a misconception , is there any other possible ways that could bring forth scickle cell ? Will like to know . When I was in secondary sch , my biology teacher taught me that sickle cell dnt get malaria . How wrong !

I CAN IMAGINE THE PAIN. IT WAS NOT EASY FOR MY TWO COUSINS BEFORE THEY PASSED ON. MAY GOD HELP YOU GUYS

@Abali. Thanks 4 d enlightenment. Lost my uncle many yrs ago cos of d same tin. Unfortunately, he died when he was newly appointed as d assistant manager of NEPA now PHCN, Benin.

Thanks op for this enlightening Topic. It's very informative and useful too.

Anythg dat can't be controlled can be managed.warriors or not we shud endeavour to take care of ourselves.i knw a warrior of about 30yrs and shes the strongest and optimistic person i know,she evn cheers me up most times

U go through pains? I never it was as serious as dis. May the Almighty God give all the warriors the grace to carry on, and i pray you shall all celebrate ur 80th birthdays IJN

Thank you for this enlightening topic, especially the calm before the storm. I have learnt this today and would be sure to look out for my little cousin.

ohaleoghene: So touching ! I sure can only imagine what you warriors go through. To learn isn't bad anyway. Most of us believe that the only way one get to be a sicker is when both parents are AS , or one is AS , the other SS , or both SS . Is this a misconception , is there any other possible ways that could bring forth scickle cell ? Will like to know . When I was in secondary sch , my biology teacher taught me that sickle cell dnt get malaria . How wrong !

You are right with your analysis of how people can get the sickle cell disease. Sickle cell is not a communicable disease and can only be passed on through the gene of each parent.
Thus, a child born with sickle cell have parents (both) who are either AS/AS; AS/SS; AS/AC, AC/AC, SS/SS.
It is therefore the fault of BOTH parents.

My eyes are filled water as am writting dis cos I have 2 around me SC and SS. may God continue to strengthen them with the blood of Jesus and d fire of Holy Ghost.

No b pain crisis, I hear say when d pikin small, e get like 35% chance to stay alive bt when e dn pass like say 21 yrs, e get 79% to live..

Good one here! But let me add another known personality who has lived above 70years of age, DR CHRISTOPHER KOLADE the former chairman of SURE-P. This is the man my dad normally use as a reference point whenever is giving me words of courage. My parents n God have been the source of my being alive. Tell it to the unborn: Sickle Cell is REAL n pain is REAL.

People living with sickle cell are lazy:.
I beg to differ with this misconception. But some people have persisted in this misconception (including my elder sister). Sometimes, you hear her say "kai! this boy you are very lazy, you don't like helping out with house chores".
We may not be physically built like others, but we detest staying idle and lazying about (I can speak for myself and other warriors I have interacted with). What do you even consider as being lazy?
* I went to a boarding school and I participated in virtually all the manual labours. (I hardly used my health as an excuse). I fetch my own water, I wash my own clothes, I did most of these things on my own. Yet, she will expect me to come back for holidays and continue the toil. Why then is she my elder sis....LoL
*For those who finished from UNILAG, you will attest that someone who walks from Main Gate to Arts virtually everyday is not a lazy person.
*Also will you call someone who participated in all the Man-O-War activities, including endurance trek a lazy person? (NYSC days).
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The only thing is that I know my limit and try not to push it...
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When it comes to using our mental strength, Warriors have been known to thrive and excel above most of their contemporaries. It is not boasting, it's just the reality.

the divine healer wil surely heal u guys or gv u d mind to bear ds sickness

My advice to unmarried people is please make sure you are compatible genotype wise before getting married.

You're 100% right. On all of the above. Really don't know what else to add cause you've said it all.

I lost a very good friend that was a suffering from SC... He played ball with us, went home to take his bath... He went to the toilet to stool, after coming out, he went in again and again and again... That was how he died... His name was Diseye

Believe me exhaustion or even dehydration can lead to sudden and unexpected attack. If you doubt this, ask any survivor/warrior to tell you their
childhood experiences.

zenith7: You're 100% right. On all of the above. Really don't know what else to add cause you've said it all.

Please you can add more to the list, because mine is not an exhaustive list of misconceptions. Warriors' experiences may be similar but at the same time there is always some differences.

enlightening

What about the "story" we hear that a female SS find it hard to conceive..

So sad. I just hope that people would be enlightened the more and check their blood sample for a match before getting married.
If you think love is blind and two carrier marries each other, remember that you're about to give birth to a child that would endure pain for the rest of his/her life.
Visit a doctor, ascertain your blood type, and put that into consideration before getting married.

I WOULD LIKE TO SAY THAT PEOPLE WITH THE SICKLE CELL DISEASE ARE THE MOST INTELLIGENT SET OF PEOPLE YOU WOULD EVER GET TO MEET. IF YOU HAVE THEM AS CLASSMATE, BE READY FOR A FIERCE ACADEMIC COMPETITION. *speaking from experience*

@Abali1 Thanks so much


I wish bone marrow transplant can be made available to every child and not just a few suffering from this disease in Nigeria.
It's very expensive whether it's done in Nigeria or any other country in the world.
This is one of the main reasons why we need good medical services, insurance, create awareness of the sickle cell disease and of course, a very good eradication programme.