such an important conversation to have. I have watched my family members deal with the pain of the disorder and seeming them deal with a crisis over and over is hard. However there are more and more options(Not enough through) So encouraging the community to give blood is doing essential work. The ACLT does great work in this area, I have donated many times through them are one of the best in the UK for spreading knowledge regarding the African Caribbean community and dealing with blood disorders
Hey Sister Patricia, Please you can help us with this one.... Help us raise awareness and empathy regarding this condition and to help encourage blood donation 🙏🏽 God has blessed you with wide reach and intellect.
I have tried three times to give blood, and now i am no longer eligible to. what i try to do is raise awareness of sickle cell and encourage others to, including those that have sickle cell. I think you all have stories to tell so the cycle of judgement can be broken especially in hospitals in an emergency. I believe every individual should have a care plan and every hospital should have guidance of treatment to prevent delays which prolong hospital stays. Ignorance of hospital staff costs the NHS more money. If you have friends or family with sickle cell, advocate for them when they are in hospital. I try my best to be understanding to people I meet in all walks of like who have sicke cell.
Great to have you in the chat but never heard you speak about this on your own platform 🤔 - in regards to you raising awareness and not your personal donations
I am a sickler and im sorry to say, but I truly feel tht within the black community/friends & family, until sickle cell hits u as a person, people do not really take the time out to study what sickle cell is about more to gain true understanding of this disease. It's only when I have a crisis & end up in hospital, I get "oh no, how r u". When I have asked black people who have been around me for years, do you know wht sickle cell is, shockingly its met with a "no not really". Y not & it predominantly is a disease that affects black people, & u've known me forever. I honestly feel as though no1 truly cares until it effects them. Thy cud never imagine the pain, emotional , physical & mental stress you go through living with a life threatening illness. Do people understand wht tht truly means.... it means everyday there's a potential that it could b your last. Imagine living with a disease like tht, tht as soon as painful crisis hits in, your literally sitting in fear that, today or the next couple of days could b your last. Anyone reading this, this disease is not a joke, please go give blood, to help save a life. Until a cousin of mine met a girl unbeknown to him with Sickle Cell, not once did he or any of his siblings ask me if I was OK in life, or cum & visit me in hospital. When this became very real to him now as he met a girl carrier not knowing he also was a carrier, and now birthed a full Sickle Cell child, I saw the pain, hurt, sadness & upset in his and his immediate families eyes, fearing for their nearest & dearest knew addition babys life/future. Now conversations of wanting to learn more about the disease through me, & what do I do to help look after myself wanted to be had. Before I felt like I was a leper in my own family. Yet here i have been my whole life suffering painful episodes, & now u want to talk to me & educate yrself about it. He said my aunt mentioned to him once he was a carrier he thinks, but until his baby was born, this was never shared amongst the family, only poor me, as though I was the odd 1 out, whilst every1 sitting in silence like thy not aware thy're carriers, like there's some shame being hidden. Please get tested, go to yr gp and say you want to get a blood test for sickle cell, as simple as tht. Took Lydia 3months, but that's the poor state of the NHS these days. Everyday I wake up to live another day is truly a blessing to me as wht day will b my last often hangs over my head, especially when you know the life expectancy of living with sickle used to be very low. Thank u to all 3 beautiful ladies for beginning a conversation on this topic, there's soooo much more that could be said, but welldone. Live everyday to be happy, positive & at peace my fellow Sickle cell warriors🖤🙏❤🤗
Thank you for sharing this and I can truly emphasise with you feeling like no one cares until it actual affects them directly through a loved one. I too have sickle cell and it has been wild journey, and often lonely. But I'm so much stronger for it and in someways it's been a gift to help my spiritual growth. Everyday is a blessing. 🙏🏾
And so true, friends and some family aren't invested because it doesn't affect them. They stare blankly and can't even support initiatives for awareness. It's a lonely road. I believe if this condition affected whites predominantly, there would be a cure. Whites support, and that has been my experience with SCD, they learn, educate themselves and show up, just look at cancers and cystic fibrosis. We don't even want to talk about carrier trait status as if that alone will make you "catch" Sickle Cell, so it's kept secret while it can literally save lives. I'm the mother of an affected warrior and my life's mission is to love her and keep her as comfortable as possible. She's the bravest and most resilient person I know 🤍💛 wish you great health and peace
Thanks for sharing. I cried when I read this❤️ It’s such a shame it took something like this for your other family to be sympathetic. Sending you the very best wishes, energy and more 🙏🏽💛
Sadly the easiest way the NHS offer sickle cell test is during pregnancy. Well done for bringing light to this condition. I work as nurse in the ICU I seen the devastating impact.
I called my GP when I started dating a carrier because I needed to know. I had a telephone consultation and an appointment was booked for bloods. It may be because I am in a different region of the country. I feel health inequalities are more pronounced in different part of the countriy.
Thank you so much for talking about this. I am 45 years old, just survived a heart attack (pulmonary embolism) cause by (DVT) deep vain thrombosis due to sickle cell complications. Only 25% of sickle cell have this in the world. I would have died if I was in uk because of medical negligence. I had just 5% of blood in me when this happened. I use to live in uk and I almost lost my eyes due to sickle cell, then i came to France where i had multi surgeries in my eyes. I bless God for France 🇫🇷 for their knowledge. is where i stay now. They don't joke about sickle cell! Thank you so much. 💓
Thank you for this video. I am currently seeking IVF with embryo testing because my spouse and I have the trait. My spouse was so sure he did not have the sickle cell trait but I forced him to be tested and sure enough he came back positive as a carrier. He is from Jamaica and this test was not done on babies when he was born. In the US this test is done during newborn screening when I was born. Black people please get tested before procreating!
I have a family member who has sickle cell anemia and it's so distressing seeing how the medical system treat her. Even as a young teenager her pain wasn't believed and now she's an older teenager it's getting worse in hospitals where they assume she's just trying to get drugs when she needs the pain medication to manage her extreme pain. Many times she's been in crisis and instead of being helped they take days debating a diagnosis she's had basically since death. It's absolutely frustrating for her and distressing. It makes life incredibly hard for her to live. The pain is actually insane. Seeing a child unable to walk because of pain and then getting ignored. I don't know how people live with themselves. If you're a medical professional please be more sensitive. Giving Ibuprofen to someone for whom morphine barely works? What sense does that make?
From 28:15 I can relate when Ronke says that finding work that suits a sickle cell patient is not easy. As for me I have experienced a restaurant in Kenya that told me I can’t work for them cause I have sickle cell and mind you, I passed all the two interviews though when I started training on day one I had painful crisis and was rushed to hospital in an ambulance from there they told me not to go back. I really felt bad and it’s not my wish to have sickle cell. Thanks Lydia for encouraging people to donate, cause the blood helps us to survive.
I didn't expect to get so triggered while watching this. Hearing the experience of people with sickle cell when they go to A&E is just DISGUSTING!! Medical racism is very real. I just had my 2nd c-section where I nearly died during and a few hours later I was in a lot of pain and they would not top up my pain meds. They tell black women we can wait because they don't think we're in pain when we give birth and it infuriates me to know that it's not limited to maternity. I can't believe people with sickle cell even have to wait in A&E, they should be given a bed and seen to as soon as they arrive. They don't care about US!! Thank you ladies for bringing this awareness, thank you Lydia for doing this video!
Sickle cell, yes let’s talk about it!! Thank you for hosting such an important conversation Lydia. We really need to do more in our community to educate ourselves and raise awareness of this painful disease. The level (or lack) of care that people with sickle cell have to endure is barely humane. And I believe it’s because it’s a disease that for now affects majority of black people. I applaud these two beautiful ladies for sharing their stories because it’s not easy and I hope that ppl who watch this video become donors, advocates to support people living with this condition.
My twin girls are both trait carriers. It's something that is not common in Southern Africa so it never crossed my mind to ever check. My other half is from West Africa and he is a carrier but never knew, it was only after we got the girls results that his mum mentioned it. Thank you for raising awareness ❤️
Wow, I’m so surprised it takes so long to get the test done in the UK! Something that is so simple here, in Nigeria, you can get the test and results on the same day! This is such an important conversation. As a carrier of the sickle cell trait, it is so extremely important for me to make sure my partner doesn’t have it. I actually had to breakup with a previous partner because he was AS. I personally, can’t bear the thought of even risking the possibility of bringing up a child to bear that life of pain, hospital visits, medication, transfusions and all that. So even though the breakup was incredibly hard for us, we saw it as for the best. I’m in a relationship now with a wonderful man who doesn’t carry the trait. Living in Nigeria, I would say that knowledge and awareness about the disease is a lot more now. In marriage counseling it’s a must to check your genotype before you can get married in the church and there are a lot of churches that won’t let you get married if both partners carry the sickle cell trait, that is if both partners are AS. In hospitals too a general checkup or medical fitness report for primary school, secondary school, university, or a job requires you to check your genotype and blood group. Mostly, it’s advised that if you and your partner are both AS don’t even go there. I think that’s the general rule of thumb because this being a third world, the cost of procedures like transfusion and all are extremely high. Majority of people can’t cover the cost. If people who are both AS do get married , it’s either that they are deciding to adopt or praying against have a sickler, or they are very sure they can cover the cost of hospital bills… I feel this conversation is very important because having Sickle Cell Disease isn’t a death sentence, there are many people who live through it, and little is known about their experience, or how to alleviate their pain or what we ca do to help. Thank you so much for this video, Lydia!! And thank you Ronke and Sayo for sharing!! ❤️❤️❤️❤️
A father figure to me passed away from this some years back and I always remembered him throughout my childhood in and out of the hospital. He was a great man and I miss him very much. Thank you for this video 🥺💕
I think the world still has a lot to learn about this condition... i work in the health sector in Africa and we take Sickle Cell as an emergency we dont make our patients wait ... maybe because we have more cases .. Thank you for spreading the word and educating the world...
Ronke looks so beautiful, Sayo looks great as always, and Lydia gorgeous. I love when sickle cell is discussed, knowledge is power and health is indeed wealth. To those with sickle cell reading this, you are loved, you will live fulfilling lives and you are more than your blood type ❤
The one thing we advocate for as medical staff is to get yourself and your partner tested for your sickling genotype BEFORE having kids. Because kids suffer the most when it comes to the different types of sickling crises we have. The pain and all kinds of complications they go through, if you see them going through it, is not something you would knowingly put your child at risk of.
The two ladies on the sofa look and behave like sisters. Beautiful connection ❤ Where I'm from (Ghana) it's so easy to access information and testing. Its unacceptable that it isn't so in the U.K
Thank you so much for this video Lydia! I’m a nurse at a sickle cell and thalassemia centre. This conversation is so insightful and so needed to spread awareness about the disease. Too often are sicklers overlooked and ignored. It’s time for a change!
This was absolutely heartbreaking, I'm so grateful to be able to learn more about Sickel Cell through your page. Thank you for sharing. These ladies were so vulnerable, I thank them for being so open. ❤❤
Thank you for this video Lydia definitely more awareness is needed. This is a personal one for me and the things touched on I've heard as well, it's very sad how many people have been lost because of the lack of help for people with this sickness. May God strengthen anyone who is experiencing this.
I appreciate seeing this as a mother of a sickle cell warrior my heart aches so much on a day to day minute to minute bases I Thank you so much for bring awareness . let us continue cause we lack so much knowledge on this topic .
Urgh 😭 the tears I’ve shed is unbelievable. Spreading awareness is so imperative. I learnt nothing about it when I was a student nurse but became inquisitive after seeing someone experience a crisis. Thank you Lydia ❤️
my moms cousin passed away from it out of no where I was little to comprehend and if she could see her lil girl my cousin today she would be sooo prod of her shes going to be a lawyer and im proud of her. My moms sister been fighting since the begging she use to be in the hospital but now shes home with her baby doggy she said her dog saved her cause she use to be in the hospital stuck in it always super sick my grandma had to raise my cousins allot of the times because how sick she would get but right now everything is good and shes about to become a grandma my aunti.
Thanks Lydia. This was very enlightening and bringing on guests who have felt the impact directly and indirectly. It very disturbing that you have to fight for treatment when you become unwell. The only time this country creates awareness is normally during black history month. This is not a seasonal issue it is happening all year round and I think this would help putting Sickle-cell at the forefront. This country is good at saying we are deeply sorry. What are we going to do with sorry when things go wrong that could have been prevented. They need to listen and act on feedback from the carriers of Sickle-cell and their families on how to treat them with genuine care and dignity. Sorry just isn’t cutting it anymore.
This is such an insightful & important conversation. Proud of you all for spreading more awareness and most especially to Ronke for the courage & stepping into complexity fearlessly. I hope more people come up to fuel this conversation & the stigma behind it. Best 30 minutes + on the internet today. Bless you all & more power to you.
I really love this video. I personally don't have the condition but I have looked after many children with sickle cell disease in the UK for many years. I would just like to make a slight correction that sickle cell is not a blood type. It is the characteristics of the haemoglobin so it has nothing to do with blood types. Sickle cell affects the protein inside of the red blood cells. This is indeed an important conversation to have. We need more people to donate blood in the UK. Right now we have a blood shortage in hospital. Blood transfusions are life saving treatments for patients with sickle cell so please help if you can.
My fav for a reason, teaching and educating the masses through her channel. I STAN! Thank you, I will be calling my GP asap to ask about getting tested. Love you ❤️❤️❤️❤️🙏🏾
Thank you for sharing and having this conversation Lydia! I did not know about Sickle Cell and I've learned a lot today. I will do my part and go give blood as soon as possible. Blessings to both ladies that shared their experiences, much love!
Excellent content!!!! I have the trait and not the disease. If I’m not careful with my hydration, I can sometimes get dehydrated and trigger pains. Not as severe as a full blown crisis, but it keeps me on my toes and focused on my health and nutrition. Keep up the excellence!!!!
I did not think I would stay for the whole vlog. It seemed too depressing a topic. So saddening. I am glad I did. Thank you all for using your platforms in the right way
I love that we speak about this. Ronke and Sayo im so sorry for your losses 🥺❤️. Thank you so much for sharing your stories. As Sickle Cell is a hereditary condition being aware of your status and your partners can save your child’s life 🥺💗. You girls are amazing.
Shout out to our Sickle Cell Warriors! Nuff respect and love to you guys! I am praying that the doctors and nurses find that compassion within their heart to treat Sickle Cell Warriors with respect and proper medical care and ultimately education ❤ Thank you for this video! May Sickle Cell Warriors become victors! Blessings to you all 🙏
Ronke & Sayo, God bless you both for sharing your experiences. I pray the Lord will continue to keep you and all your family in perfect health. And for any sickle cell warriors out there, stay strong! x
I didn't even know about sickle cell before you mentioned it in your vlog Lydia, so thank you so much! I'm a proud blood donor, it's a tradition me and my partner uphold!
This was so touching, sad to hear what people are going through with SS but glad there is a remedy for it and was really inspired by Ronke’s testimony. All the best ❤️🙏🏽
Thank you for shedding light on this important topic, to many of us are ignorant to what does not affect us personally. There needs to be more talking and testing on this topic. Thanks again
Thank you for facilitating such an informative conversation, Lydia. This has been incredibly insightful and I plan to be a blood donor from now on, because if there is any way I can help sickle cell warriors or people with blood conditions, I want to be able to do so. Thank you for making this video, and thank you to Sayo and Ronke for being so honest and sharing your experiences with it ❤
So important to talk about Sickle Cell. Thank you for this conversation ❤️ The more we the community it affects talk about it and are informed the more we can advocate for one another. I honestly didn’t have a clue what my geno type was until someone asked me. Although it’s not ideal, if you need to know your geno type from the NHS, ask you GP and tell them your trying for a baby and you need to know you geno type. That’s how I found out in a few days. Before this, it took me weeks to get no where at all. Thank you ladies for being open and vulnerable for us 🤍🤍🤍🤍
Thank you for the video Lydia, this is so important. My youngest is a carrier and that has always worried me..what the future could potentially hold for my future grandchildren. It is so important for us to educate ourselves about something that affects so many Black people. Unfortunately we have to fight for the care we need, we deserve. I lost my eldest sister from complication from having Kidney Failure for 14 years she fought. I know in my heart if she was a white women she wouldn't have faced the lack of care or urgency. My sister is a warrior along with these amazing women sharing the experiences. Bless you x
This is a video have been looking for all my life, thank you so much for making people know how we feel…. These means so much to me ☹️❤️ especially the addiction part
This video was amazing, informative and insightful. It's heartbreaking to hear the experiences you faced especially in the hospital regarding your own pain. Sorry for both your losses and thank you so much for fighting and advocating for sickel cell awareness ❤️.
Such a good video, I started donating last year and found out my specific blood type is very rare and veryyy helpful for sickle cell warriors, something like only 2% of the population has this and it really really helps. After watching this video I'm going to increase the. number of times I donate cause I thought the NHS was exaggerating it but this has changed my view on sickle cell so much!
This is such an important conversation. Thank you for facilitating it and thank you to the ladies for sharing their personal experience. This hit close to home.
This is very informative... And God bless you for having this very important conversation... And also I'm very sorry for all the people who live with this and the families of those who have lost their loved ones because of the sickle cell💔... I'm soo glad to have listened to this cause the amount ignorance I have on this subject is unacceptable since my sister is a carrier... Oh gosh... I'm motivated to do more.. Love loveee you guys❤️❤️❤️❤️
This was an excellent conversation and much needed. I cried throughout...I will start giving blood too. I am already on the donor registry. I'm sending love and light to those suffering this condition❤️
Thank you lovely ladies for your stories, vulnerability, and presence. 🙏🏽 I have donated plasma back in 2016 and have not been back in a while, but this story helps me to remember the impact of giving blood to those in need. I have had friends who survived and passed away from this disease so I completely agree with your life mission on educating those who may not know the warriors who fight this battle their whole lives since birth. Bless up ladies. ✨❤
Thank you so much for bringing this conversation light. I am a sickler. Living with such a chronic disease centered around severe pain not only affects you physically,emotionally,mentally, psychologically and spiritually. Everyday is a challenge not knowing what to expect as far as pain levels, episodes or crisis. Whether needing ER visits or hospitalizations is so draining. Having a strong support system is so important. Unfortunately not everyone is open minded or educated to such a topic. Thank you again
Hello Lydia I just wanted to say thank you to you and the other Ladies stepping up to share there stories and highlighting Sickle Cell, on your Channel it runs in my family also, and I have lost several family members to this dreadful disease. I know there are more treatments to help combat symptoms, but it still upsets me that more research isn't being done to help our people. More resources most be available to us all because S.S. isn't going away. Here in the U.S. it's just as bad when it comes to awareness. I continue to Pray for all of our Brothers and Sisters around the world living with it. Donate blood, it is saving lives Donate money to research if you can keep Shining Queens 🙏🏾💪🏾💜.
This was very well done! I loved watching every second of this! Being a sickle cell warrior myself we don’t get as much light on our disorder than other illnesses and it’s very hurtful because we go through a lot!! This made me want to start telling my story of how I found out I had sickle cell when I was 21 & pregnant even though I use to go through bad crises and everything since I was little but doctors would tell my parents I was over exaggerating nothing is wrong with me etc smh 🤦🏾♀️ sickle cell ain’t no joke 🙄
🤯 doctors where?! In which country? What type of SCD have you got? You're very lucky to have survived unmonitored. This condition is not just about pain. Hope you and your baby are doing well and getting the medical care you deserve 😊
This is a great topic and everyone needs to be aware of more ! I also had a family friend that passed away back in 2018 🥲🥲🥲🥹and my old employee also had it and I felt her pain each time 🥺🥺🥺. God bless you Ronke💚💚🥹
Well done ladies for this video and spreading the awareness! I also suffer from Sickle Cell SS and can relate and understand everything that was said. ♥️
I've just started watching this but I used to work in a school with a young girl with Sickle Cell, she was in pain most days and the teachers would completely disregard her, one even said to her 'I doubt you're in that much pain' it broke my heart, she was only 7!
Wow, Lydia, this was a very informative conversation, on sickle cell, it's a very serious illness, that can be life-threatening, thanks for sharing 👍💯💯.
Ronke I suggest you go on the mini pill, it stops your period and the bleeding, if your CS gets worse during your period due to blood loss then like I said ask your GP to go on desogestrel/the progesterone only pill. I hope this helps and I love how informative this video was!
People make sure you get tested and know your status! I'm the parent of a warrior, this is a horrible condition, watching your child suffer, I adore my child but regret that I'm part of the reason for her suffering. You have a choice, they don't. 🙏🏾Thank you for this video, awareness is the key. Young black people, please study medicine or other disciplines that will help to improve the treatment of SCD and its patients, and maybe one day eradicate this disease altogether.
From my experience in working with SC patients, my understanding is that the reason the pain is untouchable is because it pain within the bone marrow so it’s very difficult to target it or find pain killer strong enough to actually settle the pain. But we still try anything in order to just give that little bit of comfort.
Thank you for discussing this. Its so important that people have an awesome of this dreadful disease. ..I hope those who are able to donate do so after this vlog. Well done to you. A discussion on Lupus next please.
This was very educational thanks ladies, it is very sad that we aren’t being listening to by the peoples who supposed to give us the care that we required in such difficult time. I pray that there would be a Positive outcome in the nearest future 🙏🏾🤲🏾.
I’m a Sickle Cell Warrior, was diagnosed at 6 months old when I had a seizure; my parents had no clue that I had it up until then. I have been watching this video for 16 minutes, and everything that they are saying I have experienced. Especially dealing with condescending ass doctors in the emergency room. Many times I wait until the last minute to go to the hospital just because I don’t want to deal with the emergency room and the doctors that are in there. This conversation is very much needed.
Such an important topic to bring awareness to, I have the trait and I have also passed it on to both of my boys. Really enjoyed this video both of these ladies are so strong ❤️
Thank you ladies for using your voices to give intellectual knowledge and awareness to every one touched or suffering from sickle cell anemia. Thank you again Lydia for encouraging people to donate blood to save lifes. The disease sounds foreign to so many and very not spoken about due to stigmatisation and criticism dissuades candid light shed on the topic as it should be prioritised like cancer and every other sickness very known. l know for certain in Ireland the disease is taken pretty seriously and utmost care given to patients immediately in fact there's a particular hospital (our lady's children hospital crumlin) spear headed and run by good team of lrish doctors at the Heamotology department who have extensively done their research about the inherited disorder and know how to immediately curtail the pain once crisis hits hard. Living with is painful and traumatising experience. And to anyone reading this there's hope of a new drug has been created to stop red blood from being sickled, soon by 2023 every country should have this drug. Drinking lots if water daily (4 -5 litres) improves blood flow, the body is like a clock work and listens and adhere to what you put or do to it. So, stay away from stress, have rest times, it helps to restore vigour to your body system, keep warm especially during winter season because chest crisis pneumonia is the number one cause of deaths for sicklers. Light And Love🙏💕
Beautiful black empress this video is absolutely amazing I have a few things that I want to say about it… Firstly thank you so much for this Video and for using your platform to talk about sickle cell.. I myself have sickle cell anaemia and it’s not easy having this disease as well as all the complications and other illnesses that are stemmed from it., there isn’t enough being said about it so every little piece of awareness is key! Thank you.. Secondly it is also so important for black people to donate blood because we as black people can not have any other races blood we can only have black blood.. for me this is the main reason for our black community to give blood.. there are many people out there with sickle cell that need transfusions and can’t because there just isn’t enough black blood!! I was in this same situation last year I had a hip replacement and had some complications so I needed blood as I was so close to dying and my hospital couldn’t find blood for me in the whole of ENGLAND! It was so so scary lucky they gave me a different type of transfusion and that saved my life! And last but not least due to the lack of awareness with sickle cell and the complications that come with it I have made it my mission to spread as much awareness as I can so I started a UA-cam channel all about my experiences with sickle the good the bad and the ugly… you can watch my videos if you like to gain some more knowledge about sickle cell.. I’m also here if you ever have any questions about anything to do with sickle cell.. My Instagram is @_toyathomas which is also dedicated to my journey with sickle cell.. once again thank you so much Toya 🤍🤍
Such an important topic x I donate and I found out that a lot of black people carry the blood sub group “RO” which is needed for a large number of sickle cell patients. The more precise we match the blood from donor to patient, there is a better outcome for the patient. Only 2% of blood donors have the group “RO”, we really need more people to register so that we help to save lives💕
such an important conversation to have. I have watched my family members deal with the pain of the disorder and seeming them deal with a crisis over and over is hard. However there are more and more options(Not enough through) So encouraging the community to give blood is doing essential work. The ACLT does great work in this area, I have donated many times through them are one of the best in the UK for spreading knowledge regarding the African Caribbean community and dealing with blood disorders
So happy to see you here showing your support @PatriciaBright! Literally one of the first YT vloggers I still enjoy to this day😍
Yes - Big up ACLT !
Hey Sister Patricia, Please you can help us with this one.... Help us raise awareness and empathy regarding this condition and to help encourage blood donation 🙏🏽 God has blessed you with wide reach and intellect.
I have tried three times to give blood, and now i am no longer eligible to. what i try to do is raise awareness of sickle cell and encourage others to, including those that have sickle cell. I think you all have stories to tell so the cycle of judgement can be broken especially in hospitals in an emergency. I believe every individual should have a care plan and every hospital should have guidance of treatment to prevent delays which prolong hospital stays. Ignorance of hospital staff costs the NHS more money. If you have friends or family with sickle cell, advocate for them when they are in hospital. I try my best to be understanding to people I meet in all walks of like who have sicke cell.
Great to have you in the chat but never heard you speak about this on your own platform 🤔 - in regards to you raising awareness and not your personal donations
I am a sickler and im sorry to say, but I truly feel tht within the black community/friends & family, until sickle cell hits u as a person, people do not really take the time out to study what sickle cell is about more to gain true understanding of this disease.
It's only when I have a crisis & end up in hospital, I get "oh no, how r u". When I have asked black people who have been around me for years, do you know wht sickle cell is, shockingly its met with a "no not really". Y not & it predominantly is a disease that affects black people, & u've known me forever.
I honestly feel as though no1 truly cares until it effects them. Thy cud never imagine the pain, emotional , physical & mental stress you go through living with a life threatening illness. Do people understand wht tht truly means.... it means everyday there's a potential that it could b your last. Imagine living with a disease like tht, tht as soon as painful crisis hits in, your literally sitting in fear that, today or the next couple of days could b your last.
Anyone reading this, this disease is not a joke, please go give blood, to help save a life.
Until a cousin of mine met a girl unbeknown to him with Sickle Cell, not once did he or any of his siblings ask me if I was OK in life, or cum & visit me in hospital. When this became very real to him now as he met a girl carrier not knowing he also was a carrier, and now birthed a full Sickle Cell child, I saw the pain, hurt, sadness & upset in his and his immediate families eyes, fearing for their nearest & dearest knew addition babys life/future. Now conversations of wanting to learn more about the disease through me, & what do I do to help look after myself wanted to be had. Before I felt like I was a leper in my own family. Yet here i have been my whole life suffering painful episodes, & now u want to talk to me & educate yrself about it.
He said my aunt mentioned to him once he was a carrier he thinks, but until his baby was born, this was never shared amongst the family, only poor me, as though I was the odd 1 out, whilst every1 sitting in silence like thy not aware thy're carriers, like there's some shame being hidden.
Please get tested, go to yr gp and say you want to get a blood test for sickle cell, as simple as tht.
Took Lydia 3months, but that's the poor state of the NHS these days.
Everyday I wake up to live another day is truly a blessing to me as wht day will b my last often hangs over my head, especially when you know the life expectancy of living with sickle used to be very low.
Thank u to all 3 beautiful ladies for beginning a conversation on this topic, there's soooo much more that could be said, but welldone.
Live everyday to be happy, positive & at peace my fellow Sickle cell warriors🖤🙏❤🤗
Wow. This is such a touching story.❤️❤️
Thank you for sharing this and I can truly emphasise with you feeling like no one cares until it actual affects them directly through a loved one. I too have sickle cell and it has been wild journey, and often lonely. But I'm so much stronger for it and in someways it's been a gift to help my spiritual growth. Everyday is a blessing. 🙏🏾
And so true, friends and some family aren't invested because it doesn't affect them. They stare blankly and can't even support initiatives for awareness. It's a lonely road. I believe if this condition affected whites predominantly, there would be a cure. Whites support, and that has been my experience with SCD, they learn, educate themselves and show up, just look at cancers and cystic fibrosis. We don't even want to talk about carrier trait status as if that alone will make you "catch" Sickle Cell, so it's kept secret while it can literally save lives. I'm the mother of an affected warrior and my life's mission is to love her and keep her as comfortable as possible. She's the bravest and most resilient person I know 🤍💛 wish you great health and peace
Thanks for sharing. I cried when I read this❤️
It’s such a shame it took something like this for your other family to be sympathetic.
Sending you the very best wishes, energy and more 🙏🏽💛
@@jeanettenkwate474 Thank you for yr understanding & kind words, bless!
I loveeeee when black British women present themselves like this, so refreshing to watch. so intelligent,well rounded. Please more videos like this.
Sadly the easiest way the NHS offer sickle cell test is during pregnancy. Well done for bringing light to this condition. I work as nurse in the ICU I seen the devastating impact.
I called my GP when I started dating a carrier because I needed to know. I had a telephone consultation and an appointment was booked for bloods. It may be because I am in a different region of the country. I feel health inequalities are more pronounced in different part of the countriy.
Thank you so much for talking about this.
I am 45 years old, just survived a heart attack (pulmonary embolism) cause by (DVT) deep vain thrombosis due to sickle cell complications. Only 25% of sickle cell have this in the world. I would have died if I was in uk because of medical negligence. I had just 5% of blood in me when this happened.
I use to live in uk and I almost lost my eyes due to sickle cell, then i came to France where i had multi surgeries in my eyes. I bless God for France 🇫🇷 for their knowledge. is where i stay now. They don't joke about sickle cell!
Thank you so much. 💓
Thank you for this video. I am currently seeking IVF with embryo testing because my spouse and I have the trait. My spouse was so sure he did not have the sickle cell trait but I forced him to be tested and sure enough he came back positive as a carrier. He is from Jamaica and this test was not done on babies when he was born. In the US this test is done during newborn screening when I was born. Black people please get tested before procreating!
I have a family member who has sickle cell anemia and it's so distressing seeing how the medical system treat her. Even as a young teenager her pain wasn't believed and now she's an older teenager it's getting worse in hospitals where they assume she's just trying to get drugs when she needs the pain medication to manage her extreme pain. Many times she's been in crisis and instead of being helped they take days debating a diagnosis she's had basically since death. It's absolutely frustrating for her and distressing. It makes life incredibly hard for her to live. The pain is actually insane. Seeing a child unable to walk because of pain and then getting ignored. I don't know how people live with themselves. If you're a medical professional please be more sensitive.
Giving Ibuprofen to someone for whom morphine barely works? What sense does that make?
From 28:15 I can relate when Ronke says that finding work that suits a sickle cell patient is not easy. As for me I have experienced a restaurant in Kenya that told me I can’t work for them cause I have sickle cell and mind you, I passed all the two interviews though when I started training on day one I had painful crisis and was rushed to hospital in an ambulance from there they told me not to go back. I really felt bad and it’s not my wish to have sickle cell. Thanks Lydia for encouraging people to donate, cause the blood helps us to survive.
Them holding hands for the entire interview 🥹
I didn't expect to get so triggered while watching this. Hearing the experience of people with sickle cell when they go to A&E is just DISGUSTING!! Medical racism is very real. I just had my 2nd c-section where I nearly died during and a few hours later I was in a lot of pain and they would not top up my pain meds. They tell black women we can wait because they don't think we're in pain when we give birth and it infuriates me to know that it's not limited to maternity. I can't believe people with sickle cell even have to wait in A&E, they should be given a bed and seen to as soon as they arrive. They don't care about US!! Thank you ladies for bringing this awareness, thank you Lydia for doing this video!
Sickle cell, yes let’s talk about it!! Thank you for hosting such an important conversation Lydia. We really need to do more in our community to educate ourselves and raise awareness of this painful disease. The level (or lack) of care that people with sickle cell have to endure is barely humane. And I believe it’s because it’s a disease that for now affects majority of black people. I applaud these two beautiful ladies for sharing their stories because it’s not easy and I hope that ppl who watch this video become donors, advocates to support people living with this condition.
This means so much to me,my brother passed away from sickel cell in front of me my mom and dad it was so traumatic I still trying to heal from it
My twin girls are both trait carriers. It's something that is not common in Southern Africa so it never crossed my mind to ever check. My other half is from West Africa and he is a carrier but never knew, it was only after we got the girls results that his mum mentioned it. Thank you for raising awareness ❤️
What a cruel mother in law. Very selfish of her to not mention this to her Son. Wow
Been putting off registering for blood donation, just done it and have my first appointment next week.. thank you for educating us and pushing me 💕
The Sickle Cell community Thanks You... your action will surly save lives 😇
Wow, I’m so surprised it takes so long to get the test done in the UK! Something that is so simple here, in Nigeria, you can get the test and results on the same day! This is such an important conversation.
As a carrier of the sickle cell trait, it is so extremely important for me to make sure my partner doesn’t have it. I actually had to breakup with a previous partner because he was AS. I personally, can’t bear the thought of even risking the possibility of bringing up a child to bear that life of pain, hospital visits, medication, transfusions and all that. So even though the breakup was incredibly hard for us, we saw it as for the best. I’m in a relationship now with a wonderful man who doesn’t carry the trait.
Living in Nigeria, I would say that knowledge and awareness about the disease is a lot more now. In marriage counseling it’s a must to check your genotype before you can get married in the church and there are a lot of churches that won’t let you get married if both partners carry the sickle cell trait, that is if both partners are AS. In hospitals too a general checkup or medical fitness report for primary school, secondary school, university, or a job requires you to check your genotype and blood group.
Mostly, it’s advised that if you and your partner are both AS don’t even go there. I think that’s the general rule of thumb because this being a third world, the cost of procedures like transfusion and all are extremely high. Majority of people can’t cover the cost. If people who are both AS do get married , it’s either that they are deciding to adopt or praying against have a sickler, or they are very sure they can cover the cost of hospital bills…
I feel this conversation is very important because having Sickle Cell Disease isn’t a death sentence, there are many people who live through it, and little is known about their experience, or how to alleviate their pain or what we ca do to help. Thank you so much for this video, Lydia!! And thank you Ronke and Sayo for sharing!! ❤️❤️❤️❤️
A father figure to me passed away from this some years back and I always remembered him throughout my childhood in and out of the hospital. He was a great man and I miss him very much. Thank you for this video 🥺💕
Absolutely loved this conversation as a women living with Sickle Cell I felt ever word ♥️
I think the world still has a lot to learn about this condition... i work in the health sector in Africa and we take Sickle Cell as an emergency we dont make our patients wait ... maybe because we have more cases ..
Thank you for spreading the word and educating the world...
Ronke looks so beautiful, Sayo looks great as always, and Lydia gorgeous. I love when sickle cell is discussed, knowledge is power and health is indeed wealth. To those with sickle cell reading this, you are loved, you will live fulfilling lives and you are more than your blood type ❤
The one thing we advocate for as medical staff is to get yourself and your partner tested for your sickling genotype BEFORE having kids. Because kids suffer the most when it comes to the different types of sickling crises we have. The pain and all kinds of complications they go through, if you see them going through it, is not something you would knowingly put your child at risk of.
Lets keep having this conversation in our communities!❤️🙏🏾✨️
The two ladies on the sofa look and behave like sisters. Beautiful connection ❤ Where I'm from (Ghana) it's so easy to access information and testing. Its unacceptable that it isn't so in the U.K
I love that you were so moved to even put together a place for this conversation
Thank you for having this conversation! It’s so important for our community 💕
Thank you so much for this video Lydia! I’m a nurse at a sickle cell and thalassemia centre. This conversation is so insightful and so needed to spread awareness about the disease. Too often are sicklers overlooked and ignored. It’s time for a change!
Thank you for having this conversation on your platform and bringing awareness, guidance, support and advice.
This was absolutely heartbreaking, I'm so grateful to be able to learn more about Sickel Cell through your page. Thank you for sharing. These ladies were so vulnerable, I thank them for being so open. ❤❤
Thank you Lydia for using your influence to create awareness for sickle cell disease 🙏🏽🙏🏽
Such a great conversation! Thank you ladies! You’re really doing the good work by creating content like this.
❤️❤️❤️
Watching this made me so emotional 🥺 but I’m so appreciative of this video. Thank you guys 🙏🏾❤️
Excited to see Sayo on here. Thank you so much for the enlightenment on your Channel, Lydia❤️
Thank you Lydia this video is necessary! Sayo and Ronke thank you for sharing your stories you are both amazing!
Thank you for this video Lydia definitely more awareness is needed. This is a personal one for me and the things touched on I've heard as well, it's very sad how many people have been lost because of the lack of help for people with this sickness. May God strengthen anyone who is experiencing this.
I appreciate this Lydia. Thanks for raising awareness and the beautiful 2 amazing ladies sharing their experience and awareness.
I appreciate seeing this as a mother of a sickle cell warrior my heart aches so much on a day to day minute to minute bases I Thank you so much for bring awareness . let us continue cause we lack so much knowledge on this topic .
My brother is a carrier, but I never really thought about sickle cell in depth until I watched this. Thanks for bringing it to the forefront sis
Thank you for this conversation. I have lupus. I can relate to the pain , medical racism in the UK and so on .Thank you.Beautiful conversation.
Urgh 😭 the tears I’ve shed is unbelievable.
Spreading awareness is so imperative. I learnt nothing about it when I was a student nurse but became inquisitive after seeing someone experience a crisis.
Thank you Lydia ❤️
my moms cousin passed away from it out of no where I was little to comprehend and if she could see her lil girl my cousin today she would be sooo prod of her shes going to be a lawyer and im proud of her. My moms sister been fighting since the begging she use to be in the hospital but now shes home with her baby doggy she said her dog saved her cause she use to be in the hospital stuck in it always super sick my grandma had to raise my cousins allot of the times because how sick she would get but right now everything is good and shes about to become a grandma my aunti.
Thank you for shedding so much light. Didn't realise how bad the condition is. Thank you ladies
AN EXTREMELY IMPORTANT CONVERSATION. Thank you Lydia
This is so informative. Thanks so much for uploading. A special thanks to your guests for telling their stories.
Thanks Lydia. This was very enlightening and bringing on guests who have felt the impact directly and indirectly. It very disturbing that you have to fight for treatment when you become unwell.
The only time this country creates awareness is normally during black history month. This is not a seasonal issue it is happening all year round and I think this would help putting Sickle-cell at the forefront.
This country is good at saying we are deeply sorry. What are we going to do with sorry when things go wrong that could have been prevented. They need to listen and act on feedback from the carriers of Sickle-cell and their families on how to treat them with genuine care and dignity. Sorry just isn’t cutting it anymore.
This is such an insightful & important conversation. Proud of you all for spreading more awareness and most especially to Ronke for the courage & stepping into complexity fearlessly. I hope more people come up to fuel this conversation & the stigma behind it. Best 30 minutes + on the internet today. Bless you all & more power to you.
I really love this video. I personally don't have the condition but I have looked after many children with sickle cell disease in the UK for many years. I would just like to make a slight correction that sickle cell is not a blood type. It is the characteristics of the haemoglobin so it has nothing to do with blood types. Sickle cell affects the protein inside of the red blood cells. This is indeed an important conversation to have. We need more people to donate blood in the UK. Right now we have a blood shortage in hospital. Blood transfusions are life saving treatments for patients with sickle cell so please help if you can.
Does it mean as a sickelcell patient, I have to take more of protein?
My fav for a reason, teaching and educating the masses through her channel. I STAN! Thank you, I will be calling my GP asap to ask about getting tested. Love you ❤️❤️❤️❤️🙏🏾
Thank you for using your platform to highlight this!
Thank you for sharing and having this conversation Lydia! I did not know about Sickle Cell and I've learned a lot today. I will do my part and go give blood as soon as possible. Blessings to both ladies that shared their experiences, much love!
Excellent content!!!! I have the trait and not the disease. If I’m not careful with my hydration, I can sometimes get dehydrated and trigger pains. Not as severe as a full blown crisis, but it keeps me on my toes and focused on my health and nutrition. Keep up the excellence!!!!
I did not think I would stay for the whole vlog. It seemed too depressing a topic. So saddening. I am glad I did. Thank you all for using your platforms in the right way
Thank you for making this conversation possible! We need to be more award about this sickness 🙌🏾
Well done for bringing this to the forefront Lydia. Xxx
I love that we speak about this. Ronke and Sayo im so sorry for your losses 🥺❤️. Thank you so much for sharing your stories. As Sickle Cell is a hereditary condition being aware of your status and your partners can save your child’s life 🥺💗. You girls are amazing.
Shout out to our Sickle Cell Warriors! Nuff respect and love to you guys! I am praying that the doctors and nurses find that compassion within their heart to treat Sickle Cell Warriors with respect and proper medical care and ultimately education ❤ Thank you for this video! May Sickle Cell Warriors become victors! Blessings to you all 🙏
Ronke & Sayo, God bless you both for sharing your experiences. I pray the Lord will continue to keep you and all your family in perfect health. And for any sickle cell warriors out there, stay strong! x
I didn't even know about sickle cell before you mentioned it in your vlog Lydia, so thank you so much!
I'm a proud blood donor, it's a tradition me and my partner uphold!
This was so touching, sad to hear what people are going through with SS but glad there is a remedy for it and was really inspired by Ronke’s testimony. All the best ❤️🙏🏽
Thank you for shedding light on this important topic, to many of us are ignorant to what does not affect us personally. There needs to be more talking and testing on this topic. Thanks again
Thanks Lydia. This was so good i was crying
Thank you for facilitating such an informative conversation, Lydia. This has been incredibly insightful and I plan to be a blood donor from now on, because if there is any way I can help sickle cell warriors or people with blood conditions, I want to be able to do so. Thank you for making this video, and thank you to Sayo and Ronke for being so honest and sharing your experiences with it ❤
So important to talk about Sickle Cell. Thank you for this conversation ❤️ The more we the community it affects talk about it and are informed the more we can advocate for one another.
I honestly didn’t have a clue what my geno type was until someone asked me. Although it’s not ideal, if you need to know your geno type from the NHS, ask you GP and tell them your trying for a baby and you need to know you geno type. That’s how I found out in a few days.
Before this, it took me weeks to get no where at all.
Thank you ladies for being open and vulnerable for us 🤍🤍🤍🤍
Thank you for the video Lydia, this is so important. My youngest is a carrier and that has always worried me..what the future could potentially hold for my future grandchildren. It is so important for us to educate ourselves about something that affects so many Black people. Unfortunately we have to fight for the care we need, we deserve. I lost my eldest sister from complication from having Kidney Failure for 14 years she fought. I know in my heart if she was a white women she wouldn't have faced the lack of care or urgency. My sister is a warrior along with these amazing women sharing the experiences. Bless you x
Oh lord. This is such an important video. Thank you, Lydia.
So glad you are having this conversation. My cousin passed away from Sickle Cell & it’s such an important topic to bring awareness too ❤️
This is a video have been looking for all my life, thank you so much for making people know how we feel…. These means so much to me ☹️❤️ especially the addiction part
This video was amazing, informative and insightful. It's heartbreaking to hear the experiences you faced especially in the hospital regarding your own pain. Sorry for both your losses and thank you so much for fighting and advocating for sickel cell awareness ❤️.
Such a good video, I started donating last year and found out my specific blood type is very rare and veryyy helpful for sickle cell warriors, something like only 2% of the population has this and it really really helps. After watching this video I'm going to increase the. number of times I donate cause I thought the NHS was exaggerating it but this has changed my view on sickle cell so much!
Very informative conversation. Thank you for using your platform, Lydia!! 💞💖🙏
This is such an important conversation. Thank you for facilitating it and thank you to the ladies for sharing their personal experience.
This hit close to home.
This is very informative... And God bless you for having this very important conversation... And also I'm very sorry for all the people who live with this and the families of those who have lost their loved ones because of the sickle cell💔... I'm soo glad to have listened to this cause the amount ignorance I have on this subject is unacceptable since my sister is a carrier... Oh gosh... I'm motivated to do more.. Love loveee you guys❤️❤️❤️❤️
This was an excellent conversation and much needed. I cried throughout...I will start giving blood too. I am already on the donor registry. I'm sending love and light to those suffering this condition❤️
Thank you lovely ladies for your stories, vulnerability, and presence. 🙏🏽 I have donated plasma back in 2016 and have not been back in a while, but this story helps me to remember the impact of giving blood to those in need. I have had friends who survived and passed away from this disease so I completely agree with your life mission on educating those who may not know the warriors who fight this battle their whole lives since birth. Bless up ladies. ✨❤
Lydia! Thank you, this is your new lane. More interviews more awareness. Learnt so much 😘😍
Thank you so much for bringing this conversation light. I am a sickler. Living with such a chronic disease centered around severe pain not only affects you physically,emotionally,mentally, psychologically and spiritually. Everyday is a challenge not knowing what to expect as far as pain levels, episodes or crisis. Whether needing ER visits or hospitalizations is so draining. Having a strong support system is so important. Unfortunately not everyone is open minded or educated to such a topic. Thank you again
Hello Lydia I just wanted to say thank you to you and the other Ladies stepping up to share there stories and highlighting Sickle Cell, on your Channel it runs in my family also, and I have lost several family members to this dreadful disease. I know there are more treatments to help combat symptoms, but it still upsets me that more research isn't being done to help our people. More resources most be available to us all because S.S. isn't going away. Here in the U.S. it's just as bad when it comes to awareness. I continue to Pray for all of our Brothers and Sisters around the world living with it. Donate blood, it is saving lives Donate money to research if you can keep Shining Queens 🙏🏾💪🏾💜.
Sooo excited for this video with so important theme. I have sickle cell and I found so hard to be followed by a doctor or specialist. Thank you Lydia
Such a great conversation, I learned a lot! Thank you ladies for being vulnerable with us ❤️
This was very well done! I loved watching every second of this! Being a sickle cell warrior myself we don’t get as much light on our disorder than other illnesses and it’s very hurtful because we go through a lot!! This made me want to start telling my story of how I found out I had sickle cell when I was 21 & pregnant even though I use to go through bad crises and everything since I was little but doctors would tell my parents I was over exaggerating nothing is wrong with me etc smh 🤦🏾♀️ sickle cell ain’t no joke 🙄
🤯 doctors where?! In which country? What type of SCD have you got? You're very lucky to have survived unmonitored. This condition is not just about pain. Hope you and your baby are doing well and getting the medical care you deserve 😊
Such an important conversation - thanks Lydia for using your platform to highlight this and thank you to Ronke and Sayo for sharing their stories 🙏🏾
😢😢
I love how the ladies were holding hands 🥺
This is a great topic and everyone needs to be aware of more !
I also had a family friend that passed away back in 2018 🥲🥲🥲🥹and my old employee also had it and I felt her pain each time 🥺🥺🥺.
God bless you Ronke💚💚🥹
Well done ladies for this video and spreading the awareness! I also suffer from Sickle Cell SS and can relate and understand everything that was said. ♥️
I've just started watching this but I used to work in a school with a young girl with Sickle Cell, she was in pain most days and the teachers would completely disregard her, one even said to her 'I doubt you're in that much pain' it broke my heart, she was only 7!
Wow, Lydia, this was a very informative conversation, on sickle cell, it's a very serious illness, that can be life-threatening, thanks for sharing 👍💯💯.
Ronke I suggest you go on the mini pill, it stops your period and the bleeding, if your CS gets worse during your period due to blood loss then like I said ask your GP to go on desogestrel/the progesterone only pill. I hope this helps and I love how informative this video was!
People make sure you get tested and know your status! I'm the parent of a warrior, this is a horrible condition, watching your child suffer, I adore my child but regret that I'm part of the reason for her suffering. You have a choice, they don't. 🙏🏾Thank you for this video, awareness is the key. Young black people, please study medicine or other disciplines that will help to improve the treatment of SCD and its patients, and maybe one day eradicate this disease altogether.
From my experience in working with SC patients, my understanding is that the reason the pain is untouchable is because it pain within the bone marrow so it’s very difficult to target it or find pain killer strong enough to actually settle the pain. But we still try anything in order to just give that little bit of comfort.
I think the pain comes from the muscles
Thank you for discussing this. Its so important that people have an awesome of this dreadful disease. ..I hope those who are able to donate do so after this vlog. Well done to you. A discussion on Lupus next please.
This was very educational thanks ladies, it is very sad that we aren’t being listening to by the peoples who supposed to give us the care that we required in such difficult time. I pray that there would be a Positive outcome in the nearest future 🙏🏾🤲🏾.
Thank you for this Lydia!!! Very important topic!
An important conversation to be had in our community. God bless them all
I’m a Sickle Cell Warrior, was diagnosed at 6 months old when I had a seizure; my parents had no clue that I had it up until then. I have been watching this video for 16 minutes, and everything that they are saying I have experienced. Especially dealing with condescending ass doctors in the emergency room. Many times I wait until the last minute to go to the hospital just because I don’t want to deal with the emergency room and the doctors that are in there. This conversation is very much needed.
Such an important topic to bring awareness to, I have the trait and I have also passed it on to both of my boys. Really enjoyed this video both of these ladies are so strong ❤️
Wow thank you so sharing 😍 I understand better what Sickle cell is because of your sharing testimonies. ❤️
Thank you ladies for using your voices to give intellectual knowledge and awareness to every one touched or suffering from sickle cell anemia. Thank you again Lydia for encouraging people to donate blood to save lifes. The disease sounds foreign to so many and very not spoken about due to stigmatisation and criticism dissuades candid light shed on the topic as it should be prioritised like cancer and every other sickness very known. l know for certain in Ireland the disease is taken pretty seriously and utmost care given to patients immediately in fact there's a particular hospital (our lady's children hospital crumlin) spear headed and run by good team of lrish doctors at the Heamotology department who have extensively done their research about the inherited disorder and know how to immediately curtail the pain once crisis hits hard. Living with is painful and traumatising experience. And to anyone reading this there's hope of a new drug has been created to stop red blood from being sickled, soon by 2023 every country should have this drug.
Drinking lots if water daily (4 -5 litres) improves blood flow, the body is like a clock work and listens and adhere to what you put or do to it. So, stay away from stress, have rest times, it helps to restore vigour to your body system, keep warm especially during winter season because chest crisis pneumonia is the number one cause of deaths for sicklers. Light And Love🙏💕
Love this video :) who editing this Lydia it’s amazing 😻 edit love this conversation it’s so personal to me this conversation
Lydia.. Thank you for speaking on this 😇
Beautiful black empress this video is absolutely amazing I have a few things that I want to say about it…
Firstly thank you so much for this Video and for using your platform to talk about sickle cell.. I myself have sickle cell anaemia and it’s not easy having this disease as well as all the complications and other illnesses that are stemmed from it., there isn’t enough being said about it so every little piece of awareness is key! Thank you..
Secondly it is also so important for black people to donate blood because we as black people can not have any other races blood we can only have black blood.. for me this is the main reason for our black community to give blood.. there are many people out there with sickle cell that need transfusions and can’t because there just isn’t enough black blood!! I was in this same situation last year I had a hip replacement and had some complications so I needed blood as I was so close to dying and my hospital couldn’t find blood for me in the whole of ENGLAND! It was so so scary lucky they gave me a different type of transfusion and that saved my life!
And last but not least due to the lack of awareness with sickle cell and the complications that come with it I have made it my mission to spread as much awareness as I can so I started a UA-cam channel all about my experiences with sickle the good the bad and the ugly… you can watch my videos if you like to gain some more knowledge about sickle cell.. I’m also here if you ever have any questions about anything to do with sickle cell..
My Instagram is @_toyathomas which is also dedicated to my journey with sickle cell..
once again thank you so much
Toya
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Such an important and necessary conversation 🫶🏾
Such an important topic x
I donate and I found out that a lot of black people carry the blood sub group “RO” which is needed for a large number of sickle cell patients. The more precise we match the blood from donor to patient, there is a better outcome for the patient. Only 2% of blood donors have the group “RO”, we really need more people to register so that we help to save lives💕