Sickle Cell: The Enemy Within - BBC Africa Eye documentary
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- Опубликовано: 10 июн 2023
- 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 ❤❤
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
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 ❤
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
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.
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. ❤❤
Thank you for adding a brick to the less fortunate Kenyan families
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
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
You are a true warrior, and a hero in finding purpose and making a difference. May God continue blessing your intentions.
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.
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 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 😰🥺
😢❤💪🙏
I lost a sister(RIP) in 2019 due to sickle cell disease. Thank you for the awareness.
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
I am a parent to a sickler...he is 7 years now...
You are such a beautiful and strong person, Lea. What you do is amazing.
Lea Lea, you are such a go getter. Nice documentary. Putting yourself out there is soo brave of you.
Congratulations for being so strong and determined... It's not an easy journey
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
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
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.
jst Amazing, Lea is a hero may GOD bless her great advocacy
This is really incredible my dear ,thanks for sharing
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. 😢
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 🙏
22:26 very touching moments especially the expression on her face as she turned around. Congratulations!!! You have done more than many politicians.
Quite inspiring and a big boost to creation of awareness on sickle cell disease. Well done Lea. Keep the fire burning.
I have sickle cell am 33 everyone think we are going to die in any illness we have am still here
Why do people think we are going die I do not like that at all. I have it and I’ll be 36 next week.
My friend from Kenya died at 30 with sickle cell.
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. 🙏❤
Leah...you are a true warrior,God bless your efforts.
👏🏼 Good job Lea. GOD bless you and your efforts.
What a beautiful person and mission. May God continue to bless your goals and give you strength.💗
Very inspirational documentary by Lea! Very emotional and well done!😊 keep up your advocacy, you are being heard.
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. ❤
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
Your resilience is inspiring, and I hope you find the strength to overcome every challenge that comes your way."
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
This is a really beautiful documentary, thank you so much for doing this documentary to help create more awareness. God bless you all.
Warrior Here.. God got us!
He sure Got us
Pheewww what a formidable woman. Iam deeply inspired. Bless your heart lea❤. Thankyou BBC for this wonderful documentary.
I know Leah❤ She was steps behind me in high school. What a beautiful young lady with a story strength and resilience!
Great Job, well done to her.
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
_...i have Sickle-Cell Anemia...and it's hard when doctors and healthcare professionals think that we're all drug addicts..._ 😒...
Please always provide links for donations for people who suffer needlessly in the world, especially in Africa.
Lea, you are brave! Thank you for the awareness you have created. May God bless you with long life. He is more than ABLE.
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.
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 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
Thank you Lea for sharing your story sista x Stay strong, healthy n fabulous beauty ❤️⭐️❤️xxxxxx
Congratulations to her and to Taita Taveta county for the Clinic. Taveta the place where I grew up.❤
This area needs more research and time but it’s not getting the media attention worldwide and it’s a huge problem for suffers. 🙏🙏🙏
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
My brother passed 2022 through this disease but these girl she is of help to the community
God bless you Sister! I will continue to pray for changes to be made. God bless your Kingdom work 🙏🏽
I love you, Lea. thanks for all you do.
many love from Nigeria
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
Lea what an amazing woman you are ! I hope you are well much love to you from Germany 🇩🇪🇩🇪🇩🇪
God wanted you to be advocate to people who can’t stand up like you❤️
Watch is documentary in memory of my dear friend RIP❤❤ sickle cell is battle, please take care of yourself.
It's hurting, be strong
We are together in this...as a medic
Well done Lea 😊
She was my class mate at Moi Girls Nairobi proud of her
if she didnt inspire you i dont know what will im not crying there is just dust arround🥺🥺
Same! 🥹
Kudos, to you a wonderful sister but please work on the preventive measures too
Its not an easy journey but God continues to carry me through
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.
Awww sister i love you. God will see you through and in fact God is your strength. ❤❤❤Last week I watched the story of Michael on tuko my story and it affected me so much. I love Michael and I wish I could do something to help him. He is a very sweet boy. I just wanted to give him a warm hug. But we live in two different worlds.
We’re in the same world! If you’re honest you’ll just get to him
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🙏
One of my son has the worse type it was very painful . We have another son and was blessed with a perfect match for bone marrow transplant . We are so grateful to God that he isn’t struggling with the daily challenges any more . Only God is able to help us.
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 🙏
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.
Prayers
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
I lost three siblings due to sickle cell
I have the sickle cell trait ,it affected my left eye snd also causes bone pain,i try to exercise every week ,
I know of three post graduate young people who finally lost the fight, just aftee starting new jobs, one of the saddest stories
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
🇧🇧⛪📖🙏🏿Blessings Lea. I Am From The Beautiful Island Of Barbados🇧🇧🙏🏿
👋👋👋CONGRATULATIONS To You For Your STRENGTH AND BOLDNESS🙏🏿
In FIGHTING For The BETTERMENT Of Your Self And Others🙏🏿I Am In My Sixties I Have Sickle Cell Trait, My Daughter Who Is In Her Thirties Has It Also🙏🏿 Keep The Good Work Up
👍🏾🤗Continue To FIGHT To Stay Strong📖⛪🙏🏿
*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*
So, with all the beautiful buildings in Europe and America, its what they built for Sickle-Cell patients?
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
Geat
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.😭😭
Only God’s grace carries us from one day to the next.
Her bro is cute though 🤭
It's really prevelent in northern Nigeria
We need more Leas in this country. I hope the government is still aiding the patients even without the binoculars of the western Midea❤❤
GOD HEAR YOUR CHILDREN
You guys need proper Healthcare