LIVING LOVING & THRIVING WITH SICKLE CELL | NDANIREALTALK S4E3
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- เผยแพร่เมื่อ 4 ต.ค. 2024
- On this very different episode of #NdaniRealTalk, host Tomike Adeoye sits with media personalities Adeolu Adefarasin, Ibukunoluwa Ajayi, & Faari by Sisi Ope, and they discuss their experiences living with Sickle Cell. This is a very insightful conversation about young people who are thriving despite the stigma surrounding Sickle Cell Disease, and it is one that everyone should listen to with an open mind.
Living with Sickle Cell or Loving someone who is? We'd love to read your stories. Join the conversation on Twitter using #SickleCellRealTalk
If you are living with Sickle Cell and need to reach out for any reason at all, Non-profit and non-governmental foundations like The Sickle Cell Aid Foundation (SCAF) have done work to help increase awareness on Sickle Cell Disorder (SCD) and to ensure that people living with this disorder have access to the quality healthcare that they deserve. You can also get more information on their work here: scaf.org.ng/
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Thanks for having me guys, I'm glad to always shed more light on Sickle Cell! 💙💙
Very eye opening and brave of you all.
Ope I might be wrong but I remember watching your video on sickle cell and you mentioned when you were in secondary school , people didn’t always want to have to sleep next to you because of your crises . I remember that because my heart broke when u said that . In this video you said you had your first crises in University . Nevertheless, thanks for sharing your story and keep pushing through
You did great my warrior ,my fave . God bless you always 🤗❤️
@@kellytchoffo2837 she said it was in uni people didnt like sleeping next to her, pls rewatch the video on her page
@@kellytchoffo2837 No, the incident she spoke abt was when she was at the university.
It wasn't easy finding love as a Warrior but it happened and Oluwa was involved, married now and i just had my 1st child.
Congratulations💕😘
Congratulations, babe.
Congratulations
Family members mark your attendance 😍click the thumbs up
Yayyy
Family member🍾
Family members 💃
This is really enlightening. Big ups to the guests for sharing their truth. 🤗 🤗 🤗
Solutions mama
Solutions is here....team solutions Is here
Solutions mama
Our Mama Solutions in here. I salute you Mama❤️❤️
They are the real MVP's. Glad to see us getting more enlightened. 🙌
It is a very emotional topic. I am a guy married to a warrior for over 10years now and we have two beautiful daughters. You have to educate yourself about it and to understand that traditional roles cannot exist as defined by our society.
Well done, sir!
God bless you
God bless you!
Woow!
Na man you be
My husband has Sickle Cell and we’re on to our 11th year of wedding anniversary this December 2020!
We’re blessed with two healthy kids. I really want another child, but only God can make it happens.😁
I love my worrier husband because he’s a worrier in everything!
Wow amazing. I had lost hope that my son wasn't going to have kids! But God is great.
Wow! Glory
I’m so glad that everyone is learning and relating with our stories. Thanks @ndanitv for having us 🙏
I love your energy ❤️❤️
Obasanya Ope Thank you🙏
So proud of you ❤❤❤
Amazing work Ndani TV bringing these warriors together to share their truth and educate us.👍
Adedayo Onabade Thanks for your support dear 🙏
I have sent my mom to watch this because she still makes me drink ugwu and malt. I'm a 15 year old warrior so I kinda understand their pain
You are strong! God will continue to strengthen you🙏🏾
My dear your mum is correct not everything the doctors tells you that are correct it's just that what she needs to give you is not complete
Lagos has the highest ratio of people living with sickle cell, yet more than half of the population are not educated about this topic.
Thank you so much NdaniTV Team for this amazing topic.
To our dear warriors thank you for making us a part of your journey.
I must commend Miss Ibukun, she was so close to tears narrating her experiences with people.
Tomike's face when she heard #500,000 for a bed space, the goosebumps she had throughout the show, and fighting her tears on set.
Honestly, I've learnt a lot today (the financial aspect, Ugwu water, the stigma especially for single women, etc.)
I pray that God will continue to strengthen our amazing warriors, and may He continue to increase you on all sides, grant you peace, long life with little or no crisis.
Nations will rise and call you blessed, God will grant your heart desires, and continue to make you a blessing to everyone.
Thank you 🥺❤️
A standing ovation to everyone on this table.
Thank you Ndani. This real talk season is re-loaded!
Sisi Ope and Tomike in the same video? My joy knows no bounds... I am super proud of your strength Sisi Ope
I'm a warrior and I must say it's not easy, I've been told to talk about my struggles but up till now I can't, I had the worst experience growing up which I think still affects me till today but Menh family is everything o
Same here, talking is not easy my friends don't even know. I'll just disappear for awhile whenever I'm down they show up whenever I'm better, lol they joke about my dissaparnce. It's hard to tell people what going on, most times it shame.
Hmmmmm.... Thanks for sharing your story
Am also a ss and am 18 am the only one in the family that has that while growing up I feel so sad because no one wants to be associated with me I went to three different secondary School because of stigma thankfully my dad had a free health care service from his work not until he lost his job since then life as not being nice no money to pay for my hospital bills so I just do self medical and Herb funny whenever am in pains it looks like am just being lazy I didn't want to work this made me feel like God why this people don't understand how it feels to be in pain am now in University and I still feel the stigma I really don't like to get close to people because of stigma l didn't even go for the clinic test I just want to beg people please you don't have to put some else in pain because of fun or love it not worth it you say we take care of him/her but you can't take away the pain countless times I felt like talking my own life due to pain but I have a dream,I can act,sing,model, I don't want all this to go away so I encourage myself again no one really care or understand the pain I know one day am going to be that person that will be able to encourage others that if I can survive it they can too
Growing up with stigma is not easy I had to work on my self esteem again this is the 1st time am taking about it in public and I know and believe one day I will come on a TV like this to share my story.i won't die
You are strong, you are a warrior, you are a fighter.
Be strong dear 💪... God will heal you completely
You won't die Rachael ❤️🤗
❤❤❤❤❤❤❤❤❤❤
You won’t die in Jesus name. God will keep you and you will definitely be a living testimony. Amen
This hits close to home. My darling sister and friend just gained her angel wings. We miss her so much but she is no longer in pain 💔 😢
God rest their soul,stay strong😍😍😘
God's strength dear💝, God rest her precious Soul...indeed no more Pain 🙏🏼
Take heart dear
Comfort to you and all of yours🤗
We need to be more enlightened as Africans on sickle cell. This is really a sensitive topic. It's much easier for a man to find love in relation to a woman. Especially because of childbirth and other responsibilities attached to being a woman. I just wish we can be more enlightened to date wisely so we reduce this trend.
I'm 34 a warrior and still single it's so hard being accepted
I didn't know I was one until age 23,when a lecturer requested for it as an assignment, being a biology student,I got to know when I went for the test,thought it was a mistake and had to re-do the test.Had the crisis from a child up until 15,then it stopped and now it's resurfacing after 3kids and I could feel how my system has gone from very agile to minding kind of what I do,over strenuous things aren't my stuff now.Jow dealing with home crisis. I was lucky to be married to an AA and had 3 kids now,but doctors has told me to stop child bearing ,so boot hanged ,God help me look after the 3 I had. In an African home it's not always discussed or detected early,they'll only be treating malaria for you when you have the crisis. But now I know better.
@@theniqobiherbalistsugargirl Wow! I am so happy for you, that you were able to find a good man and have 3 kids. That's amazing. African parents should really do better to teach their kids about it. Thank you for sharing your story. It's so brave of you
@@TrendAlure That's the reality of the world we live in. I pray you find love within and also from others. You are indeed a warrior.
@@YemiAyodeji Amen thank you so much
I didn't know I was one until age 23,when a lecturer requested for it as an assignment, being a biology student,I got to know when I went for the test,thought it was a mistake and had to re-do the test.Had the crisis from a child up until 15,then it stopped and now it's resurfacing after 3kids and I could feel how my system has gone from very agile to minding kind of what I do,over strenuous things aren't my stuff now.Jow dealing with home crisis. I was lucky to be married to an AA and had 3 kids now,but doctors has told me to stop child bearing ,so boot hanged ,God help me look after the 3 I had. In an African home it's not always discussed or detected early,they'll only be treating malaria for you when you have the crisis. But now I know better.
This is an interesting watch, thanks for sharing with us. I'm also a warrior and I just started sharing my stories too on TH-cam. Nigerias need to be more educated on this.
Wow, you're brave
Me too
🤗🤗🤗🤗
I almost didn’t wanna click on this video, it made me shed tearsssss!!!! I can relate with the lady in black a lot. Was/still is called names and all. The pains itself can always make you feel suicidal but only God keeps us going. Thanks guys for showing the world Sickle Cell from our perspective.
This is so amazing, I’m a medical doctor and a warrior and I’m so glad this is one issue that is gaining grounds in terms of public awareness and enlightenment.
So enlightening, i can imagine living with sickle cell in nigeria requires extra Grace. Thanks for sharing.I am glad this is being talked about. Thank God as a warrior i have gone ahead to have kids and i have a supportive partner. All thanks to God.
🤗❤️
I'm a warrior as well. It's so good to see this topic being discussed. I lived in Nigeria growing up and I can relate to your experiences, from drinking ugwu, lol, to the teachers, the stigmatization and all. It def was a struggle. I'm currently in the US but it hasnt been very easy either, from the drug stugma in the ER to financial implications.
It's also painful when you meet someone amazing as a potential spouse but they are AS😭😭😭
May God give all SS patients out there more strength than they need and better health. May he bless all of us with healthy kids ❤❤❤
Yes it is! But, there is adoption. 😊
wread12 I agree with you. But make sure that’s everyone choice to adopt. No one should feel forced. I think it’s important that both parties understand the situation and if they want to move forward. But just because someone is SS or AS that shouldn’t stop you from loving someone.
Family members take position brunch is served
i really don’t understand why african parents do not talk about this. they hide it from the children and it’s even worse when the children find out for themselves. it hurts. i am always educating myself on this and just things in life(generally).
thank you so much for sharing this. 🤍
I don't tell people, all through Uni, I had no crisis, so I had no reason to mention it to my friends. I get discouraged most times when I want to tell people. It's not easy. I pray I find strength.
All my life I lived with a sickle cell and I see him feel pain and amist of the pain he still smile and tells us not to worry. You guys are the real warrior 💪👊
Brave move guys 💖
Sisi Ope for life 💞
I'm smiling as Tomike didn't cry in this video. Well done guys
This was so interesting to watch and educative too. I have a friend this a carrier and I’ve watched her battle for her life a couple of times. Tbh this has helped me a lot in terms of the way I deal with/associate with people that are SS. Well done Ndani! I watched every bit of it and I respect these guests so much for the courage/boldness and the fact that they spent time to talk about this so passionately! Shalla to my favessss Sisi Ope and Tomike🥰🥰! Family member here!❤️❤️
All of you are looking so healthy. Even healthier than people that are AA. God will continue to protect you guys 💕💋❤️😍
The day I saw Sisi Ope’s video , I lived in denial for weeks because I didn’t believe it. You didn’t have the features at all. My son has it, and it’s been God🙏🏼. The Lord keep you all in Jesus name. Amennnnnnnnnn
A very brilliant topic!🙏🏼
My immediate younger brother is SS and also O -ve...I actually bullied him while we were growing up. I still feel sad cos this affected him so much that our relationship isn't that strong. I help him in everyway I could. He still strong and 26 too
Keep loving... Don't just say it, but show him that you were ignorant them and that you love him dearly
Hummmm....
That's expensive to get his blood type sending love and light to him.
The little things you do to show him love will surely mean a lot.
I literally got so emotionalllll..Very enlightening!!! Sisi Ope gives hopeee. Thank you mama😘
As a biochemist, I understand the basic biology of SCD. However, having to hear the stories of these warriors and how they are able to live above it all.. now more than ever I am inspired. I hope something is done soon as regards sensitization and provision for care for warriors. I recall my encounter with a young warrior back in 2014, I was an industrial trainee at a hospital. I worked in the lab section and a patient had been admitted. It was an episode of vaso-occlusive crisis, and severe anaemia as a result. Long story short I donated my blood for the patient for free ofcourse..
Since then I try to donate blood every other time. As my contribution to helping SCD patients.
People are so cruel, father God. I am so proud of them for owning their truth. There have been a lot of experiments that a proving positive in this area, soon, there will be proper treatment. Sending you love, may God grant you peace🙏🏾🙏🏾🙏🏾
The real definition of Real Talk. I love that the guests are being so real. Also Tomike, you are asking the right questions 🤗🤗🤗 Great Session👍😍
Wow, to be able to talk about this openly, soo brave .
Don't think I can talk about mine like this
if anyone cares to read my testimony my genotype actually changed after treatment for my sickle cell i had in delta state in 2017 and till now it's still the same i wish i could tell everyone that went through what i went through my treatment process and journey even till now i still feel bad and regrets on what i had to go through all those years not knowing i could be healthy i just watched this and i couldn't stop the rush of emotions running through me i'm thankful for the nathropath who helped me and eternally grateful i get to live a healthy and happy life
What's a naturopath?
Kindly share the form of treatment and how others can benefit
@@karlodo5659 +1 on this. For the sake of this platform, please let people know what treatment it was
Hello? Can you share more information?
My Dear, can you share??
Please, share the process
Love how they brought warriors to share their stories,such an encouragement to alot of other warriors who are still shamed about this.
I have experienced what you guys are saying because I use to have a friend since secondary school immediately I discovered he is SS
I decided to help him in my own simple little ways because I am AS as well and up till Now I usually have crisis occasionally so I understand him better
Thank His he is now married with two kids now
You guys are indeed warriors.👍👍👍👍
This season has to be the best season of Real Talk so far. Tomike, you are an excellent host. Thank you Ope, Adeolu and Ibukun for sharing your stories. This has been very enlightening. God bless you.
I feel it was very important to touch on health care and finance... People always think it's rosy anywhere except Nigeria
As a person who has been living with manic depression for over 30 years, I can identify with the stigmatization that comes from living with sickle cell syndrome (is it a disease?). The way I have handled that challenge is to simply ignore it. I have a life and I’m going to live it, my way, no matter who’s ox is gored.
I am glad I watched this, a lot of ignorance about this - I realized myself inclusive.
In my head just thinking how extremely hard it is for people with this conditions to find love - made me to learn how to be empathic towards others.
Good job 👋🏿 Ndani
I don't know why I am balling my eyes out, but thank you to this brave warriors for sharing their experiences and journey.👏👏👏👏❤❤❤❤ Hopefully my African people will learn from them, understanding the need of checking your Genotype as African couples intending to get married, so as to help reduce this for our future generation..
Here for my girl Imabong!!!! I am so happy Ndani chose this as one of the topics for Real Talk. Warriors go through so much and society treats them so badly. Nigerians in general need to be more educated and englighted about the real issues that matter.
Thank you my love! I hope that as many people see this, they will learn to be much kinder and understanding when relating with warriors
nice to see sickle cell advocacy on bigger platforms.
Very awesome and necessary conversation. Tomike, you were made for this. You handled this conversation with so much grace and respect. Well done! Thank you Ope, Adeolu, and Ibukunoluwa for sharing your stories. Such important information! We needed to hear this conversation and we needed to hear from you all. Very emotional. Thank you!!
This is such a great topic to discuss. I must thank you guys for your bravery in ‘coming out’ with sickle cell.
Thank you for rising above the stigma.
As a HCP I would like to reiterate something I heard; sickle doesn’t only affect black people. People of African decent are at higher risk. It’s also high with Caribbean people. At the same time people from Philippines also have it
I can't wait, I am excited seeing sisi ope
exactly,same here
Yes ohhh
Same here!!!!🤸🏽
I'm here for Sisi Ope😘😘
A really sensitive topic. We really need to be enlightened about this topic. Recently lost my school daughter and she was a warrior. Keep it up @ ndani tv
Love Love Love this!!! I am proudly married to a Warrior and it is always a delight for me to see more light shed on the experiences of Warriors and their community, and emphasis on education and support. Thank you all for sharing. Glad you all are living out your dreams and inspiring us ❤️❤️❤️ 👏🏾👏🏾👏🏾. Thanks also Tomike! Great interview 👍🏾☺️
Health care in Nigeria, may God touch it.
Well done to the Ndani team! this was an amazing and refreshing episode. Lets keep sharing such important topics that are impacting so many lives. God bless and keep all the Warriors out there!
I watched this with tears in my eyes.. Great Warriors... And my Tomike.. Curtailing her tears all through ehen.... Thanks for sharing 🙏🏻
I need people to be educated and not narrow-minded because we need to think about the future of children. To my warriors, keep staying strong because Jesus is your strength!
Warriors thanks for putting more light to the issue of sickle cell, African needs to be enlighten more on this issue.
It is always easy for a man with sickle cell to find love than a lady with sickle cell.
And the first conversation as a warrior who wants to be in a relationship the best thing to do is to let your partner know about your genotype so that you can both know the way forward than keeping each other on hold.
Thanks for the talk guys and thanks to Ndanitv.
God bless all warriors...I see tomike and ope😍
Thank you for sharing your stories, as a warrior i totally understand what you guys go through. I don’t feel comfortable coming out about a Sickle cell because of the stigma. I can’t forget what i faced from teachers and classmates In secondary school. I don’t think i have the mind to come out yet
It's going to be fine dear.
This interview was so needed. Thank you for your bravery guys, may God continue strengthening you and all other warriors out there. P.s. Ope i see youuuu 😊😊😘
You warriors are just precious!! Thanks for coming out. Please let people know that marrying AA genotype is the best way to mitigate the chances of getting warrior babies. Please should not get scared about marrying an SS if they are AA.
Am so happy to see matters like this being discussed. People abroad have less knowledge about it. My biology teacher here was like how sickle cell is a good thing because they are immuned to malaria and I said people affected would prefer malaria any day anytime to the condition and told her to just teach the topic not try to butter it up .
Elizabeth Abisola OBAJUWON yes they have immunity to malaria.
That’s another myth that needs to be buried! We have malaria like everyone else... the reason they say that is because our red blood cells break down very rapidly, so most times before the malaria can manifest, it has been broken down with the red blood cells and washed away. But if there’s a high concentration of the malaria parasite in the blood, then it will show and the person has to be treated for malaria. I’ve gotten treated for malaria severally! Even when the malaria parasite gets broken down with the blood cells and ends up in the liver, it shows in a malaria test and it’s still better to treat it. So warriors also have malaria guys
TheImabong I didn’t even know that . Thanks so much for this. It’s a pity I won’t be seeing her again I would have loved to challenge her to get ge her fact straight .
Olatundun Aborisade I wasn’t disputing the fact . I only meant that one would prefer to have malaria anytime any day rather than have sickle cell. She literally made sickle cell sound like it’s something good just because of the assumption of malaria immunity which is actually false.
Thank you Ndani for having this conversation. I remember one time I went to the clinic here in Canada and the doctor was Indian, she didn't understand what I meant by genotype, I was in serious pain and she sent me home with Tylenol until I met with a Nigerian doctor who finally understood me and gave me a better pain reliever. So yeah as a sickle cell you really have to be on the look out for doctors that understands the pain of a warrior especially if you live in the west.
My like was the 1k like, why do I feel proud?
This is a real eye-opener. I have heard about people battling with sickle cell but haven't had this indepth knowledge about it. This definitely taught me a lot. Thanks to the guest who allowed themselves to be vulnerable and share their struggles to tutor the viewers on the struggles sickle cell carries battles. Well done.
I can't believe I didn't know people with SS are called warriors even though it is a big thing in my family. This was educating. Thank you
I'm here for Sisi Ope😗 Go on Warriors! The Lord bless you.
Well done Tomike, Sisi Ope, Ibukun and Adeolu
This was very insightful 👏 I am hoping for more of this.
Sis, I agree, having those conversations early allows you to be open and honest.
God will keep on preserving you all.
This was really worth watching... Nigeria hospitals and doctors, nurses, foundation should rise up.
I love that they are called
Warriors. You guys are true warriors.
OMG!! This is everything!! I enjoyed and learned so much from today's topic. I'm not a warrior but I've had people around me who are/were so I'm super excited. May God continue to strengthen every Warrior out there. Love and light ❣.
This is really educative and informative. I hope the Nigerain medical system is reformed to favour the many people who are victims of its present abysmal condition.
BTW; who else thinks that was Tiwa @ 26:01
Nice one, you guys are doing well. I'm glad people are talking about this now. kisses and hugs.
You guys are warriors... I love you'll, more strength. 💪
I have a family friend who is sickle cell and I have been with her during some of her crisis and I know she tries so hard to mask the pain but I still know she's in a whole lot of pain. I personally feel it's also painful to watch your loved one in so much pain and there's little to nothing you can do for them. It's so painful to watch
What an interesting conversation, this was rather educative. I learnt the hard way being an AS & falling head over heels in love with an SC(my 1st love too😩) 😔. To be fair he was kind of up front from the start but I didn’t take it too seriously. For me while living in 9ja, I hardly suffer from Malaria but when I do its awful, I’m also Anaemic but I go for natural iron supplements ( like vegetables etc) I also think the harsh heat doesn’t help me, I have to be in a cool climate. A lot of education is needed within our community, the amount of ignorance out there, in this day & age, is mind boggling. Thanks to all the warriors for sharing your experiences 🙏🏾🙏🏾🙏🏾
Aww, so sorry
Deolu is a warrior??? Wow....
Interesting and insightful to watch . Very proud of these warriors 💪🏽
Shoutout to my girl Imabong!!! God bless you
I think with the way our society is everything is harder being a woman
I literally cried watching this... Thanks guys for sharing those painful moments of your life and creating awareness to avert future occurrence. Information is key indeed!
Absolutely love this conversation! God strengthen you warriors 🙏🏾🤍
This is the best episode in this season. Things like this need to be talked about very often. Well done Tomi
Thank you for this conversation and raising awareness about sickle cell!
This was so insightful! Y’all are WARRIORS gosh! Thank you for agreeing to talk about this and enlighten us. Tomike, you’re an amazing host. The way you listen and ask questions is simply wonderful.
Glad I watched this!
I just made a video about it wowwww in tune with ndani sickle cell awareness month warriors 💪
Thank you to the entire team and guests at Ndani Real Talk for bringing us this enlightening episode
Thank you, thank you, thank you. Adeolu, Ope and Miss Ajayi. Thank you, Ndani TV and the host. Thank you! Thank you!
Nice topic today well educated 👌👍
Deolu, Faari and adeola thank you.
This is very enlightening and in depth talk about sickle cell disease. Pls can I get the name of those participant , especially the lady working on fundraising for the warriors. Thanks. Good Job .
Hi... please reach out to me on Instagram @theimabong 🙏
Thanks to all warriors and the host for enlightening us and sharing your personal experiences. iCelebrate your strength!
Loved this discussion. Very informative and important! May God continue to give you all strength in Jesus name 🙏🏾❤️.
Amazing, Amazing, Amazing!
I absolutely love Ope!
I have been dealing with it for 23yrs and yes it's crazy I have had 3 surgeries. I haven't been able to hold a regular job. Lost several chances, relationships men asking me when I might die or even if I can make love 😂... this is some real wahala, am happy you talk about it love from Nairobi Kenya ❤️