Sickle cell: I didn't know I had the disease - BBC Africa

Why do some people grow up not knowing they have sickle cell?
Sickle cell anaemia is a genetic blood disorder that affects millions of people worldwide. Despite this, stigma surrounds the disease, especially in West African countries. Where does the stigma come from and what can be done to improve the lives of people living with the disease.
BBC Africa reporter Jameisha Prescod spoke to African people living with sickle cell to dispel misconceptions about the condition.
Motion Graphics: Mayowa Alabi
Executive Producer: Connor Boals
Subscribe: bit.ly/subscribetoafrica
Website: www.bbc.com/africa
Facebook: / bbcnewsafrica
Twitter: / bbcafrica
Instagram: / bbcafrica

[@nancyarkuh08]

I am a 14 year old sickle cell sufferer and to be honest I really didn't know much about the ailment but bbc has given me not insight to it and that Is greatly appreciated

[@harveybarvey5080]

You are a brave child. Keep us head up and keep learning

[@jasonwebb1882]

Try being a white male at the age of 46. When I would go to the hospital and the doctors would never even know where to start. Then I was sent to pain management and my doctor ordered a blood test to check for something unrelated. When the doctor got the call and was asked why I was never checked for Sickle Cell before? My doctor said because I am a white male and that's why. What nobody ever asked me was about my long history of family. I didn't know and then when I was 36yrs old the laws changed for the privacy of adoption. I found out that my grandmother was African American...... That's when I was diagnosed with Sickle Cell. It definitely stopped me dead in my tracks and the vacation I was planning to go to Dever Colorado changed to Flordia. Keep your head up and may God be with you.

[@nuraabubakar2121]

I'm so grateful for curing me from syphilis #drewi1 you're a Savior you saved my life thank you so much I really appreciate.

[@ok-hd4ir]

you're malaria resistant i'd say that's a dub

[@bensonia]

This is so beautiful ❤️ sending love to everyone with sickle cell anemia..

[@juniamulenga]

Thank you ❤

[@Illustrated_Strength]

TY

[@nuraabubakar2121]

I'm so grateful for curing me from syphilis #drewi1 you're a Savior you saved my life thank you so much I really appreciate.

[@idimarbe]

Being a carrier of the gene (sickle trait) is nature’s way of protection from Malaria. The unfortunate part is that when people don’t know that they’re carriers and have partners with the same genotype, have one in four chances of passing on Sickle Cell Anaemia to their offsprings. So education and testing is paramount in the Africa. However, don’t forget that being a carrier is meant to protect you from succumbing to Malaria which is prevalent in Africa. The problem is a lot of people don’t know this part. I am a carrier and my Rhuematologist confirmed this. So before anyone comes for me do research for yourself and you’ll find the truth.

[@gosifefavour6111]

and am one of those four

[@nuraabubakar2121]

I'm so grateful for curing me from syphilis #drewi1 you're a Savior you saved my life thank you so much I really appreciate.

[@Cavs-Trade-45]

@AfricanDuchessLeavingNoStoneUnturned. You are right My dad has went through the same thing with the trait but most of those family members on his dad’s side have dropped like flies before 35 all of them had sickle cell disease or trait his no one had sickle cell on his mom’s side he’s the only one out of 3 to have it. No matter what it is going to be devastatingly debilitating The only good thing is protection against Malaria.

[@billyboy7187]

I have sickle cell anemia disease & avascular necrosis syndrome(Bo Jackson's Disease)due to my sickle cell anemia! I've had a lot of blood transfusions ESPECIALLY as a kid and I have had a lot of joint replacement surgeries bc of them both! Sending prayers for comfort and strength to all those suffering from sickle cell anemia!💪🏿👊🏿👏🏿💙🙏🏿✝️

[@seanregehr4921]

Sickle Cell is not a genetic disorder. Please refrain from spreading misinformation. Sickle Cell is a disease. It is caused by poor consumption habits or lacking consumption habits as in poor nutrition. In this case the cure, not remedy, but cure is a diet with sufficient plant based iron; iron phosphate being the more common form but also iron fluorine. Iron phosphate is found in many herbs found on land, while iron fluorine is found principally in herbs located in bodies of water. This should never be an issue but has become a problem due to poor or missing nutritional habits, especially coming from physicians, doctors and even dieticians. Much of the world is iron deficient, and some to larger degrees than others. Again this is not a genetic disorder and anyone suggesting as much is either poorly educated as in missing accurate information or trying to take advantage of you who is lacking sufficient information. Given the large amount of research dollars going into this field of study which not results to speak of besides perhaps man made drugs that only provide a remedy and no solution, I would be very cautious of what advice you follow. Do you prefer remedy or a cure? The choice should be simple.

[@drippydiz7784]

I’m 32 now may I ask your age . I have type S.S. I’m on my third joint replacement and was wondering how you got through it? Are you ok ?

[@jedi0100]

Very important information given here! BUT there is something I would like to add. I found out that I carry the sickle cell trait after a blood test recommended by my GP for another unrelated issue this was in the UK, in short I found out that dont have the disease but carry part of the gene and there is a very high possibility that my children may have sickle cell anemia if my partner is also a carrier of the trait or has the disease also, what shocked me was the fact I only found out this because of the blood test which was my first one EVER so the GP recommended to check for sickle cell and HIV as I'm an immigrant from Africa and have never gotten checked, checking for sickle cell is also not common especially in public hospitals in Africa, I think testing at birth and giving information to carriers of the trait is the next step to helping the continent as a whole deal better with the disease. Mungu abariki afrika🇰🇪🇹🇿 God bless Africa

[@kole1ful]

Wow I think it’s the part of Africa you’re from? Cos where I’m from, it’s one of the first tests a child does. It’s even a criteria for University admission. Blood group and genotype. Your blood group and genotype is usually behind your student ID card in my country

[@Grace-jt5xx]

@kole ivy yes it's like that in my country too. I got to know I had sickle cell when I was about to enter secondary school. It was a required test but some people still skip it or "guess" lol but they end up doing it for university compulsorily.

[@seanregehr4921]

Sickle Cell is not a genetic disorder. Please refrain from spreading misinformation. Sickle Cell is a disease. It is caused by poor consumption habits or lacking consumption habits as in poor nutrition. In this case the cure, not remedy, but cure is a diet with sufficient plant based iron; iron phosphate being the more common form but also iron fluorine. Iron phosphate is found in many herbs found on land, while iron fluorine is found principally in herbs located in bodies of water. This should never be an issue but has become a problem due to poor or missing nutritional habits, especially coming from physicians, doctors and even dieticians. Much of the world is iron deficient, and some to larger degrees than others. Again this is not a genetic disorder and anyone suggesting as much is either poorly educated as in missing accurate information or trying to take advantage of you who is lacking sufficient information. Given the large amount of research dollars going into this field of study which not results to speak of besides perhaps man made drugs that only provide a remedy and no solution, I would be very cautious of what advice you follow. Do you prefer remedy or a cure? The choice should be simple.

[@jedi0100]

@@kole1ful wow that's amazing! My family background is East African, born in Tanzania but with decedent's from Uganda but currently living in Kenya, I think compulsory checks like that would help a lot over here.

[@jedi0100]

@@seanregehr4921 wow! So what your saying is that my HIGHLY qualified General practitioner mislead me😳 I was even called by a nurse from a near by hospital offering me an official card to state my blood condition.😊

[@boseadebimpe9703]

Creating this awareness is a step in the right direction. More importantly, people living with this disease needs love and acceptance from the society

[@BBCAfrica]

🎥 You can also watch #BBCAfricaEye's documentary "Sickle Cell: The Enemy Within" here: kzbin.info/www/bejne/fn6aoYmrhpaMgbc

[@faizahbello]

I'm a 14 year old sickle cell anaemia patient and it baffles me so much how people have little knowledge about this disease. I really want to be involved in creating awareness

[@carol-annebird879]

What an interesting video. As a nurse I know about sickle cell and have cared for people in crisis but being outside of the African community was oblivious to there being a stigma around it. Really sad and I hope it is overcome!

[@cboals]

Awesome storytelling for a really important issue.

[@Sanniolumide]

That means I have to go for check up to know my health status.

[@Illustrated_Strength]

Smh

[@gms2602]

🇧🇧🙏🏿Blessings From Beautiful Barbados🇧🇧🙏🏿 I have sickle Cell Trait. I only knew when I was pregnant with my first child. My Private Doctor told me what is was because he was from Scotland the UK. My third child have sickle Cell and almost died Pregnant with third child the Doctor said if she had stayed home one more day she would have died.📖⛪🙏🏿 I am in my sixties And giving the Creator Thanks For My Life With Sickle Trait🙏🏿 Thank You For HIGHLIGHTING the Illness🙏🏿Stay Bless🙏🏿Stay Safe😷🇧🇧🌍🤗🙏🏿

[@Illustrated_Strength]

So, that means your spouse is a carrier as well. 🆘🆘🚫Everyone please get checked so there will be NO MORE Sicklers born. 🚫🆘🆘

[@kay6584]

no wayyy I knew there were various stigmas around SCD but I had no idea those terms given in Nigeria. That is so sad💔 it also baffles me how parents can raise their children & not tell them they have sickle cell like it will go away. I have always known & that’s important so you become an expert in your own care.

[@kateosunde7249]

Creating awareness by sharing this message now

[@wakandavibranium5053]

African governments need to get serious about this condition, offer universal newborn screening and screening for high school aged children. I would even go as far as preventing marriages between carriers. This is a terrible condition with all sorts of complications besides pain. Watching a child suffer through this is horrendously cruel. These governments must invest in research(skills, funds) and basic comprehensive care for those affected as early intervention is key. Need to stop sleeping at the wheel while desperate people in pain rely on sub-standard, racialised care in some places of the world looking to white saviours for help or praying.

[@jackholman5008]

African governments and doing productive things don't go hand in hand

[@akubuedubem5898]

So so sorry

[@drippydiz7784]

Thank you 🎉❤❤

[@8008man]

I might have this and I only learned this in my adulthood yet in my country there's not much studies or information about this because it's not common and some haven't even heard of it

[@onlygidee]

My kid sister has sickle cell😭,it's really hurts me to see her go through alot of pain. Is there a sickle cell support group she can join?

[@Illustrated_Strength]

If you really care & want to do something about her pain ask her dr about giving her your bone marrow. This new treatment is a cure. Drs like working only with younger patients, so I could not get the bone marrow transplant. Siblings are the only ones in the world that can give a Sickler this amazing gift.

[@onlygidee]

Thanks alot I'll reach out to her doctor

[@seanregehr4921]

Sickle Cell is not a genetic disorder. Please refrain from spreading misinformation. Sickle Cell is a disease. It is caused by poor consumption habits or lacking consumption habits as in poor nutrition. In this case the cure, not remedy, but cure is a diet with sufficient plant based iron; iron phosphate being the more common form but also iron fluorine. Iron phosphate is found in many herbs found on land, while iron fluorine is found principally in herbs located in bodies of water. This should never be an issue but has become a problem due to poor or missing nutritional habits, especially coming from physicians, doctors and even dieticians. Much of the world is iron deficient, and some to larger degrees than others. Again this is not a genetic disorder and anyone suggesting as much is either poorly educated as in missing accurate information or trying to take advantage of you who is lacking sufficient information. Given the large amount of research dollars going into this field of study which not results to speak of besides perhaps man made drugs that only provide a remedy and no solution, I would be very cautious of what advice you follow. Do you prefer remedy or a cure? The choice should be simple.

[@afuayeboah9149]

@ Popsy, where’s your country of residence?

[@onlygidee]

@@afuayeboah9149 Nigeria

[@moMoeXe]

Much power and strength to all my brothers and sisters with sickle cell anemia ... We need to talk more about it publicly and hope one day there will be a kind of cure for us. ♥️ i love ya'll ✝️☪️✡️☯️🩸

[@akanfoyawu1072]

Sickle cell generally affects those who live outside of areas where it is necessary to have it as protection against malaria. It's a natural defense immunity. But in OTHERS it is a way to keep them out if unwanted areas. So apply which one works for you.

[@rubaasma8689]

Huh??

[@TamunoOpuboCooksCookeyGam]

There is super awareness about sickle cell, and the stigma that remains cannot be greatly reduced. What we need is healthcare. Sickle cell anemia patients in Nigeria need to travel out of the country or/and raise millions of naira (tens of thousands of pounds) for bone marrow transplant. Many SS warriors die from tainted blood transfusions, etc. That's what we bloody need.

[@TheBlindChef]

Can you be diagnosed late in 20’s?

[@lisaoney1973]

Finally found a cure for my son Sickle cell I’m so glad you came into my life. I pray for long life so you can save more souls,Thanks #druromi

[@badruangoliga5116]

I run a sickle cell clinic in northern Uganda I can understand

[@kwameankrah8191]

What are they doing in Uganda to educate people to get tested for the trait Before having children? I don't hear anything about preventing this disease... I only hear about cures & therapy

[@ChiakehJuliette]

Hi please my son is 2 year and I just discovered that he's a sickle cell patient please I need help

[@tyreehollisterjr7292]

Detroit is really the worst place to live with sickle cell I really wish I could just up and move

[@koobae6584]

Hm

[@koobae6584]

It's because the area is very cold

[@Illustrated_Strength]

Spanish speaking countries and Turkish people have Sickle Cell also, not just all black, I just learned.

[@geraldobah1]

No one said it was only black people, but it's predominantly people with African ancestry

[@tyreehollisterjr7292]

I have it and really don't know how much longer I can really put up with this like the way they treat us here in Detroit makes you really not want to keep fighting I have so much I can say about this please help

[@neakydontplay990]

Please don't give up on yourself I know the pain makes you feel like giving up but find it in your heart to push thru it.

[@tyreehollisterjr7292]

Yea it's becoming hard to do

[@daniellamcgee4251]

@@tyreehollisterjr7292 I hope you are still around. You have plenty to say, and your experience and voice could help others. Try a local newspaper with your story. Try social media. It's in holding in your voice that it is an implosion that seems impossible to endure. Express your rage, suffering, trauma, experience, knowledge and wisdom, in any humanly possible way. You have a right to be fully human. Sometimes we have to make space for ourselves in this world when others deny us our thoughts, feelings, experiences and humanity. Respect yourself when others are too deficient in intelligence, or egos, to allow you your voice. May you express all you are, publicly or privately, or both. That way you will find your purpose and passions in life again. They are what give us quality of life, no matter how sick and physically limited we are. I have invisible illnesses. My care worker has sickle cell anaemia in a different Western country where it is rare, and understanding is limited. I probably understand you more than most. Keep looking for the possibilities....💜

[@unkutocheey]

We need to do better as individuals and support these guys with LOVE and CARE… And also know your GENOTYPE before falling in Love.. It is very IMPORTANT!!!!!!!!!!

[@kwameankrah8191]

Yes..thank God you said it.. But that's not the case here in America...

[@rut8851]

They do test for sickle cell at birth in the USA. I am AA and I’ve not personally known anyone that has had it but my prayers to all that suffers from it. God bless!

[@esthermensah5346]

Hi Ru T. I feel inclined to comment here that person with heamoglibin AA genotype like you, are not afflicted with Sickle cell disease. The disease mostly affect people with haemoglobin AS & associate genotypes. Bless your luck!

[@esthermensah5346]

The information that test are undertaken in the USA to detect Sickle cell took me by surprise as it is not until after the age of 6 months that the foetal haemoglobin is overtaken by the adult haemoglobin therefore any test earlier than this is irrelevant.

[@Illustrated_Strength]

@@esthermensah5346 yeah, I was wondering what the heel is this person speaking on?! There is SS & SC

[@geraldobah1]

That's funny, I am a Nigerian born and raised and I remember beign told that I did not have sc, because i was always getting sick and my parents suspected I was a sickler. But according to the blood test giving to me, I was AA. So if Nigerian doctors and my parents in the late 80s can figure that I didn't SC and have 0 chance of passing sc to my children even if my spouse was AS or any of the other genotype. So i suspect that the western world has figured out how to watch out for children that might be sicklers, right after they are born. Again i am not 100% if the U.S. can figure that out or not.

[@abdulkadimosenye5050]

I remembered losing a classmate in 1992. He died of the virus. Such a good lad. RIP

[@dreambigbig38]

Its not a virus.

[@PS-cb9il]

What virus? Sickle cell is not a virus.

[@Illustrated_Strength]

@@dreambigbig38 TY

[@Illustrated_Strength]

@@dreambigbig38 pay attention! It's a hereditary disease!

[@dreambigbig38]

@@Illustrated_Strength Good you said 'disease'.

[@janececelia7448]

It's a shame that any disease is stigmatized, yet it's common place in Sub Saharah Africa. That's why many African nations, despite treatment being available for years, people are still dying from AIDS. Some leaders state that it's an individual's immoral behavior that's caused them to have this disease, which doesn't wash when we're talking about newborns or women who get raped. Diseases in these nations go unchecked because of superstition, mysticism, poverty, poor education but mostly because of corruption and the general instability of the region. Foreign money that's being poured into these nations seems to change people's circumstances very little. I'm surprised and not surprised that sickle cell disease is considered a curse. I mean in parts of Africa they still kill people with albinism to use their body parts to conjure spells for wealth and other such B.S. Hopefully the people who've managed to find homes in more enlightened countries will stop the cycle of ignorance b/c ignorance kills.

[@abdullahiahmed2805]

I know that building

[@angelineatieno3891]

GOD IS ABLE TO HEAL YOU

[@lamor6853]

In December 2021 I got a gene therapy transplant.. never qualified for a bone marrow transplant but …. The cure is coming y’all! I can RUN, SWIM allll the good stuff.

[@dreambigbig38]

Hi, How much did it cost you? I can use your help please.

[@dreambigbig38]

@@lamor6853 Okay, thank you.

[@graceludanga2434]

Yes , there’s hope my child is free from ssa 11 yrs now Thank God as mom don’t just there look for information from your children Hospital especially those in USA

[@sundaysoyebi2548]

Gene therapy, base editing, crispr cas9 is in the pipe line as a cure

[@otakuoveride2991]

Yeah they never really named it

[@alfahassanalfa3589]

My son is a sickles cell

[@eminosose]

Honestly the pain that comes with sickle cell crisis is nothing compared to the stigma and rejection from society. Especially in NIGERIA!!!!! And this stigma comes from mostly educated people and their families. Kids with SS are mocked at schools. Parents with SS kids are mocked by the society. Instead of looking to create a safe space for these families, society would rather stigmatise them. I have come across a Nigerian “doctor” (GP) that used social media to cruelly, lambast families with sickle cell kids because they families “like playing with fire”. The Dr advised ppl to do IVF treatment and prevent SS kids from being born. You know the kind of thought Hitler and his eugenics team had. Meanwhile look at how the white communities look after those with disabilities. They create safe spaces, invest in researches and create a system for the people to blend in with society.

[@paulerinle2988]

Please us stop this, we solve this problem. With the scientific knowledge of the present, let us find solutions to this problem.

[@caenterprisellc6922]

Currently, my menstrual cycle last 3 to 5 days. All sickle heartbeats, including those stolen by recipients, must cease and never return. If not, I request criminal charges. Request to submit this statement to the US Supreme Court. #DeadlineForDeliverance

[@winfredsackitey6820]

I have sickel cell and live down the road form the centre never open

[@seanregehr4921]

Sickle Cell is not a genetic disorder. Please refrain from spreading misinformation. Sickle Cell is a disease. It is caused by poor consumption habits or lacking consumption habits as in poor nutrition. In this case the cure, not remedy, but cure is a diet with sufficient plant based iron; iron phosphate being the more common form but also iron fluorine. Iron phosphate is found in many herbs found on land, while iron fluorine is found principally in herbs located in bodies of water. This should never be an issue but has become a problem due to poor or missing nutritional habits, especially coming from physicians, doctors and even dieticians. Much of the world is iron deficient, and some to larger degrees than others. Again this is not a genetic disorder and anyone suggesting as much is either poorly educated as in missing accurate information or trying to take advantage of you who is lacking sufficient information. Given the large amount of research dollars going into this field of study which not results to speak of besides perhaps man made drugs that only provide a remedy and no solution, I would be very cautious of what advice you follow. Do you prefer remedy or a cure? The choice should be simple.

[@user-hv1sk2zx6u]

It’s serious problem. Young smart black Dr should study about it.

[@nursetinalouise]

With a highest rate in Nigeria, why is there not more public health education?! They go on about their “genotype” as if it’s an identity and like one is better person type! Why aren’t they educated that it’s about their SC carrier status?!

[@Illustrated_Strength]

Plain backwards

[@jackholman5008]

Blacks

[@cleohettori8725]

Superstition that's why, superstition stymies ALOT of progress in from being made in Africa

[@tangaz5819]

Don't almost all people of African descent have the sickle cell trait (not the disease but the genetic trait). It helps us fight diseases like malaria.

[@seanregehr4921]

Sickle Cell is not a genetic disorder. Please refrain from spreading misinformation. Sickle Cell is a disease. It is caused by poor consumption habits or lacking consumption habits as in poor nutrition. In this case the cure, not remedy, but cure is a diet with sufficient plant based iron; iron phosphate being the more common form but also iron fluorine. Iron phosphate is found in many herbs found on land, while iron fluorine is found principally in herbs located in bodies of water. This should never be an issue but has become a problem due to poor or missing nutritional habits, especially coming from physicians, doctors and even dieticians. Much of the world is iron deficient, and some to larger degrees than others. Again this is not a genetic disorder and anyone suggesting as much is either poorly educated as in missing accurate information or trying to take advantage of you who is lacking sufficient information. Given the large amount of research dollars going into this field of study which not results to speak of besides perhaps man made drugs that only provide a remedy and no solution, I would be very cautious of what advice you follow. Do you prefer remedy or a cure? The choice should be simple.

[@kwameankrah8191]

No..not almost all have the trait.. I believe it's 1 in 13.. but years there's a good percentage.. I carry the sickle cell trait.. I didn't find out until my daughter was born.. She also carried the trait.. We have to do better

[@ruddysabas2549]

🤔😯!

[@oblamarise]

I think with prayer, good diet and and life style change one can reduce sickle cell crises drastically

[@wakandavibranium5053]

What does prayer do?

[@PS-cb9il]

Do you have sickle cell?

[@wakandavibranium5053]

I know someone very close that does.

[@Illustrated_Strength]

@@PS-cb9il I'm just about to jump on this idiotic comment.

[@Illustrated_Strength]

Listen I'm 51 with a Pastor father(RIP) and Evangelist mother PLEASE this is not a diabetes nor high blood pressure! I really suffered, as a kid. I have many new joint replacements and so many transfusions and a blood exchange. Every 3 months in the hospital 2 weeks to a month at a time. I'M SO SICK AND TIRED OF PEOPLE THINKING FOOD IS THE CURE. FOH IT'S HEREDITARY & IT'S NOT A SPIRIT. 2 DUMBASS PEOPLE HAD SEX THAT SHOULD HAVE NEVER BEEN TOGETHER. KNOW WHO U SLEEP WITH BEFORE YOU PROCREATE.

[@a.b4531]

We need to mention as well that you don’t need to be black to be a sickle cell carrier or to be sick neither … I’m a white woman, half French and Tunisian and found out I was a carrier when I had one of my child that is sick. No one had never spoken about this disease around me ! More over, I now live in Middle East and this disease is wide spread here as well. People should get tested regardless of there skin Color

[@aysianese]

Tunisia is in africa

[@a.b4531]

@@aysianese Yes and ? I never said I wasn’t so, I said that you don’t need to be black to carry the gene. In people’s mind, especially in Europe, only black people may carry the gene which is false

[@Flower-ck2bs]

@@aysianese 👍🏼

[@DevonteM317]

Tunisian is Africa White people do not get sickle cell

[@LoveMafae]

this is not a black ailment

[@lusimyer]

It is more prevalent in Africans but not exclusive from my understanding. I suffer from a similar (apparently is a relative if sickle cell?) condition call Beta Thallasaemia...there is also an Alpha Thallasaemia. This means my red blood cells arent "normal ". I am only minor but if a person is major( both parents have it) they will also need regular transfusions of blood and dont live as long. This form of "blood disorder" is considered more prevalent in Mediterranean people for one. Although these conditions can be anywhere you will find that certain things are more endemic to one place than another.

[@daniellamcgee4251]

You are right. It's not about skin colour, it's about genetics. Skin colour is also about genetics, so some people with the same genetic disorders may have the same skin colour., but the gene for skin colour is not directly associated with sickle cell anaemia.

[@danieladams8085]

Doesn't effect just brown people rarely whites have got it