Sickle Cell: The Enemy Within - BBC Africa Eye documentary
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- Опубліковано 26 вер 2024
- At just six months of age, Lea Kilenga Bey was diagnosed with sickle cell. Her parents were told by doctors that she wouldn’t reach her teenage years.
Instead, Lea has become a beacon of hope for sickle cell sufferers across Africa, battling both the stigmas surrounding the disease and the authorities who fail to provide adequate care.
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Credits:
Featuring - Lea Kilenga Bey, Paul Koyanga Masamo, Albert Loghwaru, Eunice Masamo, Mnyindo Masamo
Directed by Kenneth Jura
Additional directing - Seydou Mwikali
Editor - Mwakesi Mwakale
Cinematography - Joel “Ingo” Ngui, Paul Koyanga Masamo
Camera Assistant - Kanyi Samson
Sound Recording - Edward Ahenda, Brian Ombok, Stephen Misiati
Story Consultant - Hawa Essuman
Researcher - Eva Lisangari
Executive Producer - Judy Kibinge, Peter Mudamba, Bramwel Iro
Producer - Sam Soko
Production Managers - Ivy Kiru, Joan Njeri
Line Producer - Ruth Munyiri
Assistant Editor - Jordan Inaan
Additional Cinematography - Lea Kilenga, Paul Koyanga Masamo
For BBC:
Executive Producer - Peter Murimi
Edit Producer - Desmond Daniels
Reversioning Producer - Anna Payton
Editor - Ian Lloyd
Sound Mix - Jez Spencer
Colourist - Boyd Nagle
Online Editor - Chris Stott
Digital Producer - Tamasin Ford
Social Media Producer - Anusha Kumar
Africa Eye Editor - Tom Watson
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#SickleCellAnaemia #SickleCellDisease #Kenya #Nairobi #SCD #ChronicIllness #WorldBloodDonorDay #WorldSickleCellDay
📖Read more about how Lea is fighting to dispel the myths around the sickle cell 'curse' here: www.bbc.co.uk/news/world-africa-65846412
There should be increased advocacy on checking for genotype compatibility before cohabitation or marriage, this will help reduce it. We'll done lea
Sin shortens life, because of our sins we are separated from God.There is nothing in this world worth going to hellfire for. Repent of your sins and be born again, Jesus Christ is coming back everyone. It's about a relationship with Jesus Christ NOT religion/denomination. We have a relationship with Jesus Christ by repenting of all of our sins, praying and reading the Bible everyday, believe the gospel of Jesus Christ and be born again.
Happy belated, More blessings and great experiences
I have sickle cell as well and I’m 35 going on 36 this month on the 27th and I believe that we will live a long life thanks to god.
Amen to that 🙏🏽
May God give you your heart desires. We are twinnies. 27th june
AMEN! You will live into your old age.
@@swahiliwithZita That’s so Awesome and thank you very much twin and I can’t wait to come out there to learn Swahili and eat good food.
@@derrickjones2032 welcome
I have sickle cell, I also have leg ulcer for more than 15 years it stole my life and opportunities, the treatment are so expensive and the government are not helping , it hurts that you can not afford your medications. I have done 3 surgeries. I am happy people are taking about it now , some people just treat us like we aren't human too and it isnot fair ... I also have a younger sister whos also a warrior, i have lost 2 friends and one close friend i watch her in pain then she gave up , it was so horrible . I havent been able to move on from that but i just want people to know that We also have hopes , dreams and we want to live and love and experience life just like you all . Thank you for this ❤❤
Very good documentary, it's worthwhile watching.
Being a sickle cell warrior (aged 40), advocate and volunteer at one of the biggest children's hospital in Zambia I can say the battle is real - many people both the illiterate and the learned have little or no knowledge about this serious genetic health condition but with continuous sensitization and education about this health condition, many people around the global will come to know what sickle cell disease entails - because sickle cell disease is not a silent disease but it's a disease that needs advocacy and sensitization in order to fight the myths and misconceptions that surround it.
Hello sis 🇿🇲
That’s absolutely right
@@firstladygift.2431 Hello
@DonnellOkafor0304 count your blessings dear - your health condition is 100% under control - I guess from childhood.
You won't believe me if I tell you that when I was growing up, I never knew anything about hematologists - this is because all the hospitals where I used to go to there was no sickle cell specialists, all the doctors who used to treat me be it at government or private hospitals had little or no knowledge about my health condition and everytime I had a complication the answers I used to get were " THIS IS COMMON IN SICKLE CELL" and they never used to tell me why it is common or what has caused that complication, hence I ended up mismanaging my health condition especially when it came to medications. Until 2015 by then I was 33 years, that's when I came to know my first hematologist at a children's hospital, he is a paediatrician hematologist but he started treating me and helped me to manage my health condition following to do's and don'ts of living a healthy lifestyle with sickle cell anaemia and here I am living a positive lifestyle with sickle cell anaemia. At the moment, only a few hospitals in Zambia are conducting sickle cell clinics and only a few people born with this genetic health condition are able to access treatment from these hospitals - so the struggle is real.
People please, before marrying and having children have a genetic test. SCD is devastating to parents and children
Genotype test is just enough. Trust me, love will not be enough when the aftermath of the decision the parent made, which they could easily avoid.
I had to let go of almost five years relationship I had because of the high probability of some of the children we might have may be SS. I can't watch my wife in pains not to talk of my children. If I know that our genotype could implicate our children medically, psychologically and physiologically, and I go ahead with the marriage. I don't want to call that love, it's just sheer greediness to me.
They do not get married, they get raped
What if im AA and my partner is SS are there chances that if we control reproduction we could live happily without having sickle cell children@@olawalearemu5490
This strong and elegant young woman is an inspiration. I hope that the governments will start to provide health education and health care for the people.
My friend is 62 and she is doing well by the grace of God. There are things she uses that help with circulation in her own case and it’s working. Certain foods, phytonutrients, light exercise etc
Inspiring piece.Such a strong girl.Thanks for advocating for the rights of SCD patients.
As a sickle cell warrior, this is so touching and inspiring. Thank you for pushing through the hurdles and helping many others in your country live through this illness. ❤❤
If your doctor has advised against it, please do not push yourself. You can support by offering liquids to those who ran the marathon. My name is Gifty from Ghana 🇬🇭. I will be 57 years in July. I have SCA. I am SS. I work in the banking industry. I am a banker by profession. I take 5mg folic acid a day, drink abt 8 or more litters of water a day, I also take a lot of green leafy vegetables. I try to avoid stress as much as possible. During weekends, I do rest a lot. I enjoy life and I love myself. I have a beautiful 20 year old daughter. Management of SCA is the key to ensuring good health. Do not push yourself into a marathon that will put u into crises, it is not worth it dear. Anyways congrats for participating., but love yourself dear, love yourself.
Thank you for adding a brick to the less fortunate Kenyan families
I have sickle cell and I am 34 and I am battling leg ulcers . The disease is no joke. One requires massive support
Hello please as a warrior would you advise parents to abort a child they already diagnosed as a warrior than having them live
I lost a close friend to this disease, she was just 32. She would go into crisis and the pain was unbearable 😢
So sorry for your loss
I lost a sister(RIP) in 2019 due to sickle cell disease. Thank you for the awareness.
You are a true warrior, and a hero in finding purpose and making a difference. May God continue blessing your intentions.
A very touching and emotional documentary, Am a sickle cell patient and its really affecting and to much stigmatisation, BUT we are born to live and survive. GOOD OUR PARENT
This is so touching. I myself is suffering from this deadly disease. People suffering from sickle cells disease are going through a lot. It not really easy.
@@eaciae Amen. Thanks
Rip my dear sister Maryanne and to my little brother still battling with it 😢may God see him through all these crises.
We're in same boat dear It's not easy having two siblings Suffering from sickle cells anemia 😰🥺
😢❤💪🙏
Amazing job Lea! As someone with a family member and friend with sickle cell disease, as well as a patient of a demyelinating disease for more than 5 years, I know the battle it can be sometimes just to get out of bed in the morning! Love the perseverance on your part and that you didn't back down in the face of adversity. You are strong and courageous. Keep on fighting, keep on pushing until you reach your goal.
The doctor's labcoat at the hospital is very clean and well tailored. Insightful documentary too
This is a very touching documentary. Thank you very much for sharing and educating us. Thanks! 🙏🏽
I didn't realise that there were myths like generational curse about sickle cell. Your documentary opened my eyes to some discriminations towards people with sickle cell that i wasn't aware of. Thank you
You are such a beautiful and strong person, Lea. What you do is amazing.
Leah...you are a true warrior,God bless your efforts.
Warrior Here.. God got us!
He sure Got us
This is so nice,I am touched that BBC is bringing the sickle cell conversation mainstream and with the voice of someone going through it all,I have been an advocate of sickle cell in Nigeria and I know first hand the challenges,well don e LEA and thank you BBC
Lea Lea, you are such a go getter. Nice documentary. Putting yourself out there is soo brave of you.
OMG I know her... she's from my home town... I'm proud 😊
Please if you have her contact number do you mind sharing it with me I am also a sickle cell patient but I don't usually go through crisis maybe because I use herbs to support my medications but I still want to offer some help to her and the community I know what it's like fighting with sickle cell.Thank you.
After watching your documentary I was deeply moved and I pray that all sufferers of this condition find the solutions in the future. I hope that meicicine progresses so you may all find the relief you deserve from this cruel disease. 🙏❤
Your resilience is inspiring, and I hope you find the strength to overcome every challenge that comes your way."
Rafik, the guy who first introduced me to ABBA (Yes, those sweet singing swedes!) had SCD. So did his sister but 'mildly'. I'd go visit them both when they were having - episodes. Of pain. Very sad. Rafik, the brother, was gone bfore his 18th birthday. R.I.P Rafik Rahman. I've never forgotten you. 😢
Me being a fellow sca warrior and the struggles I have faced seems so small compared to other countries. Lea is brave to take things on fight for her sca brothers and sisters, and I love it.
Congratulations for being so strong and determined... It's not an easy journey
Thank you so much Lea for your unwavering support to our fellow sickle cell warriors in Taveta, Lets keep doing what we can to help our sickle cell community anywhere we find ourselves. Sickle Cell can't stop Us... Let's keep making impact one at a time. Audrey Mukoro Founder Audrey Sickle Cell Foundation Nigeria.
jst Amazing, Lea is a hero may GOD bless her great advocacy
Lost all my siblings to this deadly disease 😢. I don't wish it on even my worst enemy. Please intending couples should please take the genotype test very seriously.
So sorry for your losses. 😔
@@BBCAfrica please can I get lea's contact
Am a sickle cell warrior,now at 40.running the marathon is a big no pls dont.any 7:05 vigorous activity that inreases oxygen demand is a risk for crisis
22:26 very touching moments especially the expression on her face as she turned around. Congratulations!!! You have done more than many politicians.
Thankyou Lea for using your health to dream,build and inspire for the greater good. May you continue to be abundantly blessed with all it is that your heart desires 🙏❤🙂
May GOD reveal the treatment and cure for this dreadful disease and make them have wellbeing. GOD bless 🙏
This is really incredible my dear ,thanks for sharing
I am a parent to a sickler...he is 7 years now...
👏🏼 Good job Lea. GOD bless you and your efforts.
Please always provide links for donations for people who suffer needlessly in the world, especially in Africa.
Thank you Lea for sharing your story sista x Stay strong, healthy n fabulous beauty ❤️⭐️❤️xxxxxx
Very inspirational documentary by Lea! Very emotional and well done!😊 keep up your advocacy, you are being heard.
this is so heart warming, i have a sister who has ss n we were told she won't live pass 18 now she is 23 we thank God everyday, tho when she's in pain it takes a toll on her n fam cuz theres nothing we can do to ease her pain, often times we don't know what to do.
Great Job, well done to her.
Lea, you are brave! Thank you for the awareness you have created. May God bless you with long life. He is more than ABLE.
Congratulations to her and to Taita Taveta county for the Clinic. Taveta the place where I grew up.❤
This is awesome 👏🏻 Girl you are on a mission and keep pushing ❤ God has put you in the position to use you and you have the strength. You achieved so much already not just for yourself but for so many others! Praise God. ❤
What a beautiful person and mission. May God continue to bless your goals and give you strength.💗
I love you, Lea. thanks for all you do.
many love from Nigeria
Quite inspiring and a big boost to creation of awareness on sickle cell disease. Well done Lea. Keep the fire burning.
Take it from me. I've ran in a marathon and still planning to run more and I'm a sickle cell patient. You can do it 💪
My sister tried jogging, any stress causes a crisis
Hey Lea. Glad to know you are keeping on.
One of primary classmate never made it to this far, God has His ways and very happy to see this.
#Youarebeingheard
#07
#Theworldisbeingeducated
#youlookawesomedespite
This girl is such a gem, she is strong, smart and determined 😮
My prayers goes to you all thanks for the education about this illness ❤
God bless you Sister! I will continue to pray for changes to be made. God bless your Kingdom work 🙏🏽
Pheewww what a formidable woman. Iam deeply inspired. Bless your heart lea❤. Thankyou BBC for this wonderful documentary.
_...i have Sickle-Cell Anemia...and it's hard when doctors and healthcare professionals think that we're all drug addicts..._ 😒...
Lea what an amazing woman you are ! I hope you are well much love to you from Germany 🇩🇪🇩🇪🇩🇪
This area needs more research and time but it’s not getting the media attention worldwide and it’s a huge problem for suffers. 🙏🙏🙏
I do have sickle cell treat. It's been tough all my life. Howard University has been doing research.
@caro.caro.9578, you mean you have traits or you have the disease? Life shouldn't be though with a trait. The disease yes but traits should have a normal functioning life just like those without. I have traits, my husband has trait. We are one of very few couples by the grace of God to have children without the disease
@@kukuakukua I have the traits and know friends who had Sickle Cell disease and didn’t live to 30 years old.
@caro.caro.9578 yes many people die before age 30, especially in africa. It's a terrible disease. There has been a few success stories here in the US through bone narrow transplant but it's still not that easy option for everyone.
@@kukuakukuahope u stop having babies because that disease never goes away, my mom had 4 children before she got her full sickle baby and she lost just at 2 years in the 90s.
@africansister by the graced of God we are blessed with 3 healthy miracle babies. No more babies. You are right, it doesn't go away and as a healthcare provider, I wouldn't encourage anyone to do what I did. It takes a special faith.
Well done Lea 😊
This is why we need medical researcher doctors..it's not a joke ..when it hits u ..when the disease hits u then one understands the importance of doctors ..
True, Nyanza and Western Kenya have largest number of those with sickle cell in the country, a research center has been initiated at Joorth aka Russia hospital. My sister passed on at 19 years in 1994 so I applaud Lea for doing her best to address the situation for the warriors and their families.
The only way is to test for carriers before having a baby with your partner when intending to start a family
Great documentary showing a light on a subject that need a solution.we need to push for better care for patients and medicine that help with managing in times of crisis.Thank you
This is a really beautiful documentary, thank you so much for doing this documentary to help create more awareness. God bless you all.
Sickle cell cell is not common in South Africa.. that's why I was surprised that it common in WA and couple have to visit doctor before marriage.
Kudos, to you a wonderful sister but please work on the preventive measures too
if she didnt inspire you i dont know what will im not crying there is just dust arround🥺🥺
Same! 🥹
She was my class mate at Moi Girls Nairobi proud of her
This one has really touched me and I think it's now time the government n leaders to in for the support of our brothers n sisters battling this disease, many ppl are suffering in silence, stigma n all kinds of pain but I must this very lady from my home area is God chosen to coming out n speaking for thousands of ppl outside here,so encouraging atleast someone gets hope of life.... barikiwa sana mghenjiwa n I wish you all the best 🙏
It's hurting, be strong
Prayers
I never knew that desease was so ravaging in Kenya. I developed the less severe form (AS) but still it causes me pain in my legs and they are often swollen when I sit down or stand up for a long time. People sometimes look awkwardly at my legs without knowing what am going through. I feel so much heat in my feet due to the lack of oxygen… . May God assists us🙏
GOD HEAR YOUR CHILDREN
We are together in this...as a medic
I lost two of my bros they never reached 15... I myself am a carrier and I remember before I knew what it was, I used to curse, there i days i loathed getting out of bed coz the pain was just out of this world, People think u r lazy but u really cant withstand the pain, closed shoes sometimes feel like u r walking on fire.... medication gives u extreme acidity. there was even a xhritsmass i spent in bed. and to add it up u have no job... wueh this is a life sentence
21:12 the life of an activist! Those people looked like they didn’t care. Maybe they did but they should be the ones battling for the sick and not the other way round. At least they ended up with a clinic which is very laudable
We are strong
We are beautiful
We are amazing ❤❤
Sickle cell is painful, but we will be alright 👍
0 seconds ago
Hello please as a warrior would you advise parents to abort a child they already diagnosed as a warrior than having them live
I have the sickle cell trait ,it affected my left eye snd also causes bone pain,i try to exercise every week ,
*WHO CAME UP WITH THAT IDEA OF BELIEVING PEOPLE WITH SICKLE CELL DO NOT SURPASS THE 25YEARS OF AGE😢?THAT PERSON WAS A FRAUD,I GOT A BROTHER INLAW WHO GOT SC ANAEMIA AND HE'S ABOVE 25 AND LIVING A HEALTHY AND NORMAL LIFE*
What is the best medicine for sickle cell disease ???
Folic acid, penicillin for managing and infection control
Born marrow transplant
Let us educate parents and spouses. I am aware that some parents were told they can't get married because of their genotype(AS &SS) ,but they still went ahead and got married. And wen the first child has sickle cell ,they don't stop giving birth they still go ahead and give birth .Something that could have been avoided but they decided to do it and these innocent children suffer because of their parents wrong choices!!.
It is torture to watch them wen they have their symptoms . I was unfortunate to watch one of them lose their live in front of my eye. The trauma has stayed with me since.😭😭
Its not an easy journey but God continues to carry me through
So, with all the beautiful buildings in Europe and America, its what they built for Sickle-Cell patients?
Only God’s grace carries us from one day to the next.
Lots of sickle cell anaemia/yellow fever/TB in Migori ....help me understand why Soo many people have these diseases over there
Dearest Lea, I'm watching from NY, USA. Moving forward, the best thing is for individuals and their partners to test in order to rule out the disease or trait. That way they will not breed.
I know of three post graduate young people who finally lost the fight, just aftee starting new jobs, one of the saddest stories
It's really prevelent in northern Nigeria
I feel for her, I have the trait. I have lost many family members and friends to this horrible disease.
my sister had it we lived in France they don't how to deal with it too :(
but you can live more than just teenage year though
I have sickle cell I’m 31 msm supplements help a little wit yellow eye vitamin c nd folic acid.
My mom lost her baby in the 90s from sickle cell. Since then she was prescribed a tablet to take while pregnant until she gives birth , she has also advised people to take the same tablet it does not treat sickle cell but it helps the unborn baby not to be a full sickle child.
Please what is the name of tablet?
Omy god😢I cry yaraab when I remember I lost my brother 20012 because of this disease.May Allah grand him jannatul fridous Yaraab 🙏
So sorry to hear this. 😔
Amiin, Inna lillahi wa Inna ileihi Rajiun
Godbless you all , this young lady is amazing , the world is hearing you and I am praying the government keeps providing the help you so desperately need, God is watching love you all ❤🙏🏿🙏✝️ much love from UK 🇬🇧 ❤️ 💙🌹🌹🌹🌹
With sickle cell, the maximum distance you should run is just 0.5 miles!!! 0.25miles one way, 0.25 miles back. That is a safe distance + plenty of water before the run and after the run!!! 2 litres total minimum at least...2 litres!!!
24%?! That’s nothing short of a public health emergency. I can only imagine the massive response this would have incurred in a Western country if around one quarter of a local / regional population were to be afflicted by such a devastating disease!
Can CRISPR gene editing technology be used to treat this disease? @KEMRI can shed light on developments in this area.
True but research is still ongoing. I am very convinced that a solution will be found in the nearest future to bring happiness on the face of our parents, brothers and sisters. CRISPR can edit the genome but we still need to introduce a new gene to replace the S by A. Human genome is so complex and more time is needed to come up with a solution. Meanwhile partners must check their status before engaging themselves. That will help to reduce the rate of this horrible disease. We love her. May God grant all people who are suffering from this disease a long life.
We need more Leas in this country. I hope the government is still aiding the patients even without the binoculars of the western Midea❤❤