As a doctor from Nigerian now in the UK, we were OVER THOUGHT about sickle cell disease in Nigeria cos it’s very common. My Husband a Paediatrician in Nigeria (now a GP in the UK), used to run the paediatric sickle cell clinic. In the UK however it isn’t as common plus it’s a disease that affects black peoples (make of that whatever you may), so many doctors won’t know too much first hand about it. They learn it in school, but it’s one of those things that cos you don’t see you don’t remember so much or have first hand experience as doctor. There are diseases we learn in Nigeria that aren’t common like they are here in the UK that a doctor from Nigeria might struggle with. I don’t know what African country the other lady was born in but in Nigeria most babies born in hospital have their blood group and genotypes checked so they know. In the UK too now, babies have a day 5 blood test where the genotype is checked. I pray GOD’s blessings and protection on every sickle cell warrior
Hi everyone My mom Had sickle cell anemia too she was born with it because it was hereditary and passed down from her father. I want you all to Know Jesus Christ has healed my mom and she no longer has it....their is no cure for sickle cell anemia but I want you to know that Jesus Christ is the cure. He turned it around for all of us... My mother was healed from it therefore I don't have it neither do my kids. Turn to Jesus Christ today and receive your healing
What a great episode. As a none-black person who is dating a Nigerian guy whose aunt passed away from sickle cell this was so informative for me. There should be more awareness of this condition out there especially to people outside of the African community as I didn't even know what sickle cell was until I met my boyfriend. Wishing you all the best and God bless.
I wish I was with them talking about it, I could definitely use the platform. I have Hemoglobin SC, just turned 27 last month & this weekend I went to Colorado on a business trip (I live in Atlanta)...towards the end of the trip, I went into crisis-I've had my fair share of crises in the past, so I know what triggers to avoid like sudden bursts of physical exercise and extreme temperatures (especially the cold). But this time, I hadn't really done anything to trigger it so I was completely lost, until I went to the doctor and he pointed out the *difference in elevation between Georgia and Colorado.* The air up there was much thinner/less humid so my body wasn't getting enough Oxygen, even though I couldn't physically tell the difference :( I'm getting past the brunt of it today, but anyway it's refreshing to hear others talk about what they've gone through w/this illness. I'm somewhat lucky in the sense that even though I've had crises that were intense (levels of pain where I've literally begged for death), none of them were life-threatening and it's scary to hear about instances where it gets that bad. In the same breath, I'm glad I know more about this illness and I can manage it much better now than I could before. I also really wish there was more awareness about it in general....but in any case, thank you for this video ♥
@@MakeItCommon it's hard, medical bills plus the stress and all that people have to go through when I have crisis. Sometimes I try to keep it to myself and try to treat myself but the pain gets unbearable
I'm thrilled that you're all adults, all I ever see is care for kids, diet for kids, all the information is based on kids. It feels like adults are just given up on. Being SS seeing how my doctor looked at me, I was so shocked, because I'd never even heard of it. I was almost abused emotionally while doctors tried to figure out why I was having issues then a specialist finally found the issue in 2018, when I'd started getting severe pain in 2012 then it worsened in 2014. It's been so trying. I'm glad you can all laugh and be happy because days can be trying.
Living with sickle cell is basically NOT LIVING at all It’s really frustrating and no one can ever understand….we warriors alone know what we go through It is well ✨❤️
The thing that sucks most is the extreme fatigue and chronic pain. I don’t have sickle cell but I do have alpha thalassemia hcs. Being 45, it’s especially harder in the past 10 years because it’s harder to find excuses for missing social engagements with friends,bc using the same excuse is hard after a while as I don’t look sick. Also, being Asian in the Midwest I don’t have many friends who understand my illness either because it’s just me, they forget the real struggle of the illness, which is partly my fault as I’ve always overcompensated by being the most lively or competitive over the oddest of things that people take for granted, such as standing up at the bars, staying out the latest to even staying awake, being D Driver (I don’t know if it’s a thalassemic thing I don’t get drunk easily even when I try and when I do I can sober up after 30 mins to an hour, so drinking has never been appealing to me). That lasted til I hit 30ish they the sharp decline and medical intervention (more transfusions) arthritis, jaundice as hell, frontal bossing thus hats, hands shaking, speech slurring, oversized liver and spleen, ruptured gallbladder at 23 (almost died but luckily my cellphone was charging and plugged in so I was able to pull it down from table and dialed 911 before passing out) severe gout, bone pain, broken bones or sprains, osteoporosis, and now torn ligaments just from steps. Insurance is crazy here in America so family members are burdened until I qualified for Medicare, thank god for that!
Just FYI on the science, the gunshot is less because of the adrenaline released from being in that situation. With Sickle cell there is no such release, infact you're even pumping with cortisol because you're worried... which even heightens the pain.
I’m so sorry 🥹 this really hurts because sometimes I feel like I could just leave this world because I’ve gone through so much as a sickle cell warrior…. Your friend is sure resting peacefully now…your friend is an amazing strong warrior that fought through ❤️❤️❤️
Amazing show!!! But I need to correct something…. I have always known broken up with every every man I dated that was AS cause I am very informed of the out come. Long story short met my partner in US got married he told me he was AA his parent sent his medical results from Nigeria signed by a Doctor I was so excited shortly was pregnant fast forward my child is …. It didn’t affect our relationship it made us stronger researching cure and very optimistic. Firstly not all parent responsible. Secondly I’ll recommend testing to be certain you know your genotype. Lastly if you both know, I wish I knew do your research about PGT -HLA in a heart beat I’ll marry my husband regardless only thing I’ll change is having kids through IVF period or not have children at all no child deserve to go through life living with pain…. Thank you guys so much for this video very informative 👍 My question what is your awareness on sterm cell as a cure via a sibling match or a donor ?
Religious Black nurses are always doing the most unnecessary talking when they think they can relate to the patient ... 😪😪 Worse is when they get distracted by their conversation on God and prayers and delay treatment .
Tbh this only happens when I am talking to people who don't understand sickle cell. And they are showing they don't understand God either. We were promised that we could find peace in God, not that we would live a life free from pain.
Sickle Cell....Hmmm! I can't begin to tell my story. Its still amazing that I'm alive with 3 biological sons (all AS). I educate the young 'Just B4'. That is before you meet your partner and discuss getting serious; both go do your genotype test. It's better than bringing a child into the world to suffer. Your love for each other does not cut it when your life is disrupted with a Sickle Cell child. The word 'Love is Blind' does not cut it here. AND even if he/she is white Caucasian, pls do a test. We've met White Caucasians that are Sickle Cell Warriors (SS) too. It is transcending into the White community too due to Multi- interracial heritage.
I lost my dad when I was 11 to sickle cell. He was only 36 years old. I never really understood as a child what he was going through. Thank you for using your platform to spread awareness 💗
Im loving this content. Its nice to see a group discussing the effects of sickle cell. Im ss carrier myself and I can relate to everything you guys are saying. Hope to see more content like this ❤
Thank you for doing this. When I was growing up I could never go online and hear shared experiences of what I was going through. I'm so glad these next generations will get this.
Thank you for going above and beyond with this interview. I have sent it to friends who don't quite understand but are willing to learn! Thank you for being a voice for us!!
I'm a sickle cell patient in Nigeria and I also have leg ulcer for more than 13 years now and liver enlargement, sickle cell is a death sentence...it affects the way of living like you don't really live , you try to survive each day like it's not something I would wish for anyone . I just hope people would care more and help more
There is help guys. i know it doesn't sound like it. but the only solution we have is Jesus! he created everything and so he can definitely correct what's not going right
As someone who lives with sickle cell (In Atlanta GA) i love how we are having conversations about it but whats next? where do we go from here. I want to find solutions on how more people can get cures now. that should be the next steps to find out
I appreciate y'all for this, much love seeing that sickle cell disease awareness for adults is getting to a whole new level. I've lived 33+ years of my life knowing I am SS (at least I was told so when I was like 7). Now the difference with me is that I rarely ever had crisis (just 1 blood transfusion my whole life) and that made me live a bit recklessly by consuming the stuff I shouldn't be eating like alcohol and not hydrating properly. I lived like this until I turned 30 yrs, and boom I started having migraines (my brain isn't getting enough oxygen/blood due to sickle cell) . Living in Eastern Europe did me bad because this illness is not common here. I went through various CT Scans and MRI looking for help and even at that point, it never occurred to me that my genotype could be a reason. Long story short, I got the idea eventually from SCD advocates and that was when I started taking vitamins and all the recommended medication, doing my personal research to understand what sickle cell disease is actually about (I'm not proud of doing this at an old age but no time is ever late). I've now quit every bad behaviour including alcohol and caffeine/soda and working towards living a healthier life. Sad that everyone sees people with SCD as someone with a death sentence but we are warriors and will keep fighting. Thank you for creating this platform.
I think black people need to be aware of sickle and before and after dating or getting marry. Do your genotype test before you get serious in relationship or get married. So stop, having sickle cell children. Also, if you have sickle cell, educate yourself, exercise and eat healthy.
When she said “Just because I look ok doesn’t mean I’m ok” I felt that. I have had people tell me that I don’t look like I’m in pain.
Thank you for sharing Rebecca !
As a doctor from Nigerian now in the UK, we were OVER THOUGHT about sickle cell disease in Nigeria cos it’s very common.
My Husband a Paediatrician in Nigeria (now a GP in the UK), used to run the paediatric sickle cell clinic.
In the UK however it isn’t as common plus it’s a disease that affects black peoples (make of that whatever you may), so many doctors won’t know too much first hand about it. They learn it in school, but it’s one of those things that cos you don’t see you don’t remember so much or have first hand experience as doctor.
There are diseases we learn in Nigeria that aren’t common like they are here in the UK that a doctor from Nigeria might struggle with.
I don’t know what African country the other lady was born in but in Nigeria most babies born in hospital have their blood group and genotypes checked so they know.
In the UK too now, babies have a day 5 blood test where the genotype is checked.
I pray GOD’s blessings and protection on every sickle cell warrior
Thank you for watching and sharing !
Let us know if you would like us to put out the full extended version (it’s about a hour long ! )
Yes pls, we need the full version uploaded🙏🏾
Yes!
Yes we need that now
Yes please!!! 😅
Yes we defo need the full version 🙌🏿🙌🏿
Everyone in this video is so strong. 💕 I can't talk about my sickle cell without getting emotional.
Thank you for having us & thank you for using your platform to raise awareness of sickle cell ♥️
Thanks for being a part of this ❤️
Thank you for doing this. I've just sent this to some of my family, because I'm 31 and still trying to educate them.
💕
👏
Hi everyone My mom Had sickle cell anemia too she was born with it because it was hereditary and passed down from her father. I want you all to Know Jesus Christ has healed my mom and she no longer has it....their is no cure for sickle cell anemia but I want you to know that Jesus Christ is the cure. He turned it around for all of us... My mother was healed from it therefore I don't have it neither do my kids. Turn to Jesus Christ today and receive your healing
I am 42 years old and sickle cell, lately I have been suffering a lot from the disease can someone be talking to me, I get lonely all the time
What a great episode. As a none-black person who is dating a Nigerian guy whose aunt passed away from sickle cell this was so informative for me. There should be more awareness of this condition out there especially to people outside of the African community as I didn't even know what sickle cell was until I met my boyfriend. Wishing you all the best and God bless.
Thanks for watching Iliyana !
Really loved this. Hard watch but necessary conversation to 1) have and 2) listen to! Well done for speaking your truths!
thanks for watching Precious !
This is powerful, grateful for the insights🙏🏾
Thank you for watching !
I wish I was with them talking about it, I could definitely use the platform. I have Hemoglobin SC, just turned 27 last month & this weekend I went to Colorado on a business trip (I live in Atlanta)...towards the end of the trip, I went into crisis-I've had my fair share of crises in the past, so I know what triggers to avoid like sudden bursts of physical exercise and extreme temperatures (especially the cold). But this time, I hadn't really done anything to trigger it so I was completely lost, until I went to the doctor and he pointed out the *difference in elevation between Georgia and Colorado.* The air up there was much thinner/less humid so my body wasn't getting enough Oxygen, even though I couldn't physically tell the difference :(
I'm getting past the brunt of it today, but anyway it's refreshing to hear others talk about what they've gone through w/this illness. I'm somewhat lucky in the sense that even though I've had crises that were intense (levels of pain where I've literally begged for death), none of them were life-threatening and it's scary to hear about instances where it gets that bad. In the same breath, I'm glad I know more about this illness and I can manage it much better now than I could before. I also really wish there was more awareness about it in general....but in any case, thank you for this video ♥
Thanks for watching and the support Triv ! ❤️🙌🏾
having sickle cell I feel like a burden to my parents
Its such a shame that people feel like this! please don't feel like a burden !
Couldn't have said it better
This is the only comment I can relate with
@@MakeItCommon it's hard, medical bills plus the stress and all that people have to go through when I have crisis. Sometimes I try to keep it to myself and try to treat myself but the pain gets unbearable
We’d really appreciate the full version. Thank you for this❤️
Thanks for watching Adewale! The extended version is now out !
Thank you this informative and important video. Grateful to everyone that participated and wish you all the best. 🙏🏾
Thank you for watching Stephanie !
I'm thrilled that you're all adults, all I ever see is care for kids, diet for kids, all the information is based on kids. It feels like adults are just given up on. Being SS seeing how my doctor looked at me, I was so shocked, because I'd never even heard of it. I was almost abused emotionally while doctors tried to figure out why I was having issues then a specialist finally found the issue in 2018, when I'd started getting severe pain in 2012 then it worsened in 2014. It's been so trying. I'm glad you can all laugh and be happy because days can be trying.
Living with sickle cell is basically NOT LIVING at all
It’s really frustrating and no one can ever understand….we warriors alone know what we go through
It is well ✨❤️
Thank you this was so insightful💕💕💕
Thank you for watching !
The thing that sucks most is the extreme fatigue and chronic pain. I don’t have sickle cell but I do have alpha thalassemia hcs. Being 45, it’s especially harder in the past 10 years because it’s harder to find excuses for missing social engagements with friends,bc using the same excuse is hard after a while as I don’t look sick. Also, being Asian in the Midwest I don’t have many friends who understand my illness either because it’s just me, they forget the real struggle of the illness, which is partly my fault as I’ve always overcompensated by being the most lively or competitive over the oddest of things that people take for granted, such as standing up at the bars, staying out the latest to even staying awake, being D Driver (I don’t know if it’s a thalassemic thing I don’t get drunk easily even when I try and when I do I can sober up after 30 mins to an hour, so drinking has never been appealing to me). That lasted til I hit 30ish they the sharp decline and medical intervention (more transfusions) arthritis, jaundice as hell, frontal bossing thus hats, hands shaking, speech slurring, oversized liver and spleen, ruptured gallbladder at 23 (almost died but luckily my cellphone was charging and plugged in so I was able to pull it down from table and dialed 911 before passing out) severe gout, bone pain, broken bones or sprains, osteoporosis, and now torn ligaments just from steps. Insurance is crazy here in America so family members are burdened until I qualified for Medicare, thank god for that!
Just FYI on the science, the gunshot is less because of the adrenaline released from being in that situation. With Sickle cell there is no such release, infact you're even pumping with cortisol because you're worried... which even heightens the pain.
Thank you for watching Damien!
Just lost a friend yesterday to sickle cell, it's really sad💔
I’m so sorry 🥹 this really hurts because sometimes I feel like I could just leave this world because I’ve gone through so much as a sickle cell warrior…. Your friend is sure resting peacefully now…your friend is an amazing strong warrior that fought through ❤️❤️❤️
I'm 48 living with sickle cell anemia beta thalassemia. It's like I'm a prisoner in my own body.
Hello! Very sorry for that, hope you're doing well!
thank u so much i needed this
Hmm I have been passing through a lot of breakups all because I’m As and all the men that’s coming are all As 😭😭I’m so frustrated
Amazing show!!! But I need to correct something…. I have always known broken up with every every man I dated that was AS cause I am very informed of the out come. Long story short met my partner in US got married he told me he was AA his parent sent his medical results from Nigeria signed by a Doctor I was so excited shortly was pregnant fast forward my child is …. It didn’t affect our relationship it made us stronger researching cure and very optimistic. Firstly not all parent responsible. Secondly I’ll recommend testing to be certain you know your genotype. Lastly if you both know, I wish I knew do your research about PGT -HLA in a heart beat I’ll marry my husband regardless only thing I’ll change is having kids through IVF period or not have children at all no child deserve to go through life living with pain…. Thank you guys so much for this video very informative 👍 My question what is your awareness on sterm cell as a cure via a sibling match or a donor ?
Thanks for watching Pamela !
Religious Black nurses are always doing the most unnecessary talking when they think they can relate to the patient ... 😪😪 Worse is when they get distracted by their conversation on God and prayers and delay treatment .
Tbh this only happens when I am talking to people who don't understand sickle cell. And they are showing they don't understand God either. We were promised that we could find peace in God, not that we would live a life free from pain.
This type of show is just amazing and the the type of awareness content that’s needed!
Well done to everyone who took part 🙏🏽
Thank you so much for watching Lidia ! let us know what other health topics you would like us to cover
Oh no....it get more complicated
Sickle Cell....Hmmm! I can't begin to tell my story. Its still amazing that I'm alive with 3 biological sons (all AS). I educate the young 'Just B4'. That is before you meet your partner and discuss getting serious; both go do your genotype test. It's better than bringing a child into the world to suffer. Your love for each other does not cut it when your life is disrupted with a Sickle Cell child. The word 'Love is Blind' does not cut it here. AND even if he/she is white Caucasian, pls do a test. We've met White Caucasians that are Sickle Cell Warriors (SS) too. It is transcending into the White community too due to Multi- interracial heritage.
Was your husband As or Say?
I’m so happy this video is out! There is NOT enough research in sickle cell.
Deffo this! We need more people to be aware
I lost my dad when I was 11 to sickle cell. He was only 36 years old. I never really understood as a child what he was going through. Thank you for using your platform to spread awareness 💗
Sorry to hear that Calayse :( and thank you for watching !
Im loving this content. Its nice to see a group discussing the effects of sickle cell. Im ss carrier myself and I can relate to everything you guys are saying. Hope to see more content like this ❤
This discussion was great, thank you for hosting it ^
Wish we had these types of discussions i Norway. I appreciate you guys for sharing🙏🏾
Regards from a 40 yr old sickler.
Thanks for watching Mercy!
Please release the hour long version, I have no knowledge on sickle cell at all and this is very informative
Hey we have released this !
So hard to watch and God bless you all 😞❤️ soooo courageous & strong.
thanks for watching Ashlee!
Thank you for doing this. When I was growing up I could never go online and hear shared experiences of what I was going through. I'm so glad these next generations will get this.
You are so welcome! and thank you for watching !
I have Sickle Cell and had the best doctor as a child. Not so much as an adult…there’s definitely a gap in services.
Thank you for going above and beyond with this interview. I have sent it to friends who don't quite understand but are willing to learn! Thank you for being a voice for us!!
Thank you for sharing and supporting Shayshee!
I'm a sickle cell patient in Nigeria and I also have leg ulcer for more than 13 years now and liver enlargement, sickle cell is a death sentence...it affects the way of living like you don't really live , you try to survive each day like it's not something I would wish for anyone . I just hope people would care more and help more
Thank you for watching Jess! Stay strong !
There is help guys. i know it doesn't sound like it. but the only solution we have is Jesus! he created everything and so he can definitely correct what's not going right
My mom died when i was eight years old and i was fourteen when i knew i had sickle cell , I'm seventeen years old now still facing the pains. 😭😭😭
So so sorry for your loss ❤️
Thank you
Amazing conversation, incredible guests. I love this.
Thank you for watching Mosique! Deffo a great bunch of people we had on!
Plz post the full video
It’s up already - (it’s called the extended version!)
As someone who lives with sickle cell (In Atlanta GA) i love how we are having conversations about it but whats next? where do we go from here. I want to find solutions on how more people can get cures now. that should be the next steps to find out
I lost my cousin to sickle cell in 2020. He suffered a lot.
I appreciate y'all for this, much love seeing that sickle cell disease awareness for adults is getting to a whole new level.
I've lived 33+ years of my life knowing I am SS (at least I was told so when I was like 7). Now the difference with me is that I rarely ever had crisis (just 1 blood transfusion my whole life) and that made me live a bit recklessly by consuming the stuff I shouldn't be eating like alcohol and not hydrating properly. I lived like this until I turned 30 yrs, and boom I started having migraines (my brain isn't getting enough oxygen/blood due to sickle cell) . Living in Eastern Europe did me bad because this illness is not common here. I went through various CT Scans and MRI looking for help and even at that point, it never occurred to me that my genotype could be a reason. Long story short, I got the idea eventually from SCD advocates and that was when I started taking vitamins and all the recommended medication, doing my personal research to understand what sickle cell disease is actually about (I'm not proud of doing this at an old age but no time is ever late). I've now quit every bad behaviour including alcohol and caffeine/soda and working towards living a healthier life.
Sad that everyone sees people with SCD as someone with a death sentence but we are warriors and will keep fighting. Thank you for creating this platform.
Thank you for sharing and supporting !! 🙌🏾🙌🏾
Is this treatment in Ghana
Hey I am in Ghana too, can we get in touch and learn more
I think black people need to be aware of sickle and before and after dating or getting marry. Do your genotype test before you get serious in relationship or get married. So stop, having sickle cell children. Also, if you have sickle cell, educate yourself, exercise and eat healthy.
Someone I know was best friends with Asiatu, she has sadly passed away😭 I recognised her immediately! RIP Asiatu🥺❤️
I got same shit 🥹🥹, in pain rn actually
I hope you feel better ❤️🩹