I saw you comment and as well have sickle cell and believe I’ve been experiencing crisis. But not sure if it what I’m having. Can you tell me what it feels like, from your perspective!
@@MSANNA-jy7kf hello! I hope you’re well! Here’s how I’ll describe it in different areas Arms: They fell heavy and hot to the touch. It hurts to move them, so I keep them close to my body. Legs: a dull, deep annoying pain with sharp pain in between. Like a Charlie horse times 20!! Back: is the worst! Indescribable pain honestly. Chest: like you’re having a heart attack. It hurts to breathe in and the pain goes around to your back
When I was younger, I’ve experienced some doctors thinking I’m at the emergency room just for pain medication. When in reality, I am in so much pain. They do not understand the type of pain we experience.
America is the same way. I had the same situation. My sickle cell crisis triggered when I got pancreatitis. I was incapacitated & brought in by an ambulance & I still had to wait. I was screaming the nurse thought I was faking until I passed out. I was glad I got her fired
And for this very reason my husband is dead! I'm so frustrated and annoyed that CARE is not applied and Care Plans not followed! I am so disappointed with the lack of love and care of 'some' hospital care professionals because as busy as they are, just a pause, care and listening could have saved his life! And Yes! I'm very angry because nothing can be done for him now.
This is the same situation I went through in Royal Liverpool Hospital. They refused to give me any meds for my pain. I had to go home myself on a cab to use my prescribed meds and manage my pain. I’m in a situation where I rather suffer in pain than go into hospital.
This happens in Jamaica as well. The battle is between those who understand what sickle cell is about and have first hand knowledge of it and those who don't know and don't have first hand knowledge about it. If they were to see for themselves the daily struggles of a sickle cell patient, they would not be punishing patients by withholding vital assistance. All major Hospitals need a section designated for sickle cell patients. The staff needs to be trained and knowledgeable in all aspects of the disease.
I was diagnosed with sickle cell trait during a sporting competition and holiday in America in 1984 on my return the NHS Doctors here in the UK dismiss it and then again I get diagnosed in 1996 after minor surgery they couldn’t decide whether I had trait or the disease, I am disgusted with the NHS in 2021 it finally confirmed I have Sickle Cell Trait I have cerebral palsy and sickle cell trait I do have pain bouts, sometimes I am left in A&E for hours before I am seen. Sometimes I don’t even get a blood test just pain killers, and sent home to organize my pain relief medication. Every time now I have to contact my GP and ask him if I can take extra pain relief so that I don’t have to go to hospital as I do not know how I am going to be mistreated. I have a wonderful GP who helps me manage my pain level at home and regular blood tests when needed. My pain bout starts when I struggle with muscle tightness pain they always appear in the same place.
It really is so sickening n so heart breaking how medics treat those with full blown sickle cell and the trait is disbelieved when we show up in pain. I’ve been disbelieved since childhood when gps told my mum it was growing pains yet those same stabbing bone pains and fevers and swollen limbs have continued till today and I’ve had multiple tests growing up until 2020 where my body got worse and I suffered the worst sickle cell trait crisis of my life, was left disabled for 3 months with crisis that began on my stomach and arms and then my full body went into crisis and then because I kept calling my gp after the sickle cell society in London got in touch with me and a local sickle cell thalassaemia centre genetics counsellor advised him of what I was going through, my tests were already in the system from all the years I’d suffered, I ended up having a stroke and other complications because they left me untreated for so long. Still constantly unwell now because of complications of being left untreated for so long! There’s a huge racial bias within healthcare globally! It is disgusting how sickle cell haemoglobinopathies are treated or rather mistreated. Sending blessings your way ❤🙏🏽
@@symptomaticSCT Thank you so much for your reply I found it extremely heartwarming. I am so glad I have found somebody else who has been having the same issue as I have. I shall carry on trying to campaign for better treatment equality for all whether one has sickle cell disease or traits. One must be treated equally and believed. What makes me so cross I have to real beg for a blood transfusion I know my own body when I don’t feel very well.
At a point I was told to walk because the couldn’t push my chair even though I was in tears and in pain. The nurse said I was lying about my pain. This is a case of racial discrimination which in turn affects method of treatment.
5:10 is as REAL AS IT GETS!!!! I'm right here with you Bredren coming from Ohio in the States.⁹ We need to report and Talk more and STICK TOGETHER LIKE WE STUCK!!!!
I’ve been in situations where the doctor thinks I’m there for just pain medication because I’m not crying or whatever I’ve delt with sickle cell my whole life I’m an adult so I’m use to some of the extreme pain and hold back tears, luckily for me I know 2 board members of the hospital I go to so when they think such things I send a text and they usually get in trouble and give me a new doctor who understands or treat me themselves. I don’t understand why a lot of doctors are like that and some refuse to go by the pain plan for no reason at all I feel like some doctors get their anger out by seeing others suffer.
Been there, I take my meds with me & self medicate when the doctors or nurses don't want to help. Although I must admit Central London Hospitals have gotten a lot better & have had a lot more training on sickle cell & how to treat patients.
It’s the same way here in america. Because of drug addicts people with legit chronic pain are loosing our pain relief which causes us to loose our quality of life. It’s even worse in people of color . Though I’m only 12 I know this as I have chronic pain and several chronic illnesses and I’ve seen it firsthand when we bring up pain we start to be treated as if we’re addicts just looking for our next fix though that isn’t true or right. Our pain medication doesn’t make us high nor does it cause us to check out from life. With chronic pain patients our medication helps us to live and participate in life rather than just sitting around existing. Everyone really needs to learn this information as some people believe the lies and propaganda that is being told about chronic pain and pain medication.
Where i live in the us they've treated me like a drug seeker since I've been a child, like it's affected my body so badly and the improper care makes me very depressed idk what to do I can really so much 😔
I wish doctors and nurses are aware of how much pain we’re in. We need pain meds asap!!
I saw you comment and as well have sickle cell and believe I’ve been experiencing crisis. But not sure if it what I’m having. Can you tell me what it feels like, from your perspective!
@@MSANNA-jy7kf hello! I hope you’re well! Here’s how I’ll describe it in different areas
Arms: They fell heavy and hot to the touch. It hurts to move them, so I keep them close to my body.
Legs: a dull, deep annoying pain with sharp pain in between. Like a Charlie horse times 20!!
Back: is the worst! Indescribable pain honestly.
Chest: like you’re having a heart attack. It hurts to breathe in and the pain goes around to your back
When I was younger, I’ve experienced some doctors thinking I’m at the emergency room just for pain medication. When in reality, I am in so much pain. They do not understand the type of pain we experience.
Black people need to start donating the blood you need for transfusions.
@@grabbymcpoosey614 people in general need to donate…but healthcare is so bad these days when it comes to accommodating sicklers, I stay home.
This is infuriating! They have care plans. Implement the care plan. How do they not know what to do?
America is the same way. I had the same situation. My sickle cell crisis triggered when I got pancreatitis. I was incapacitated & brought in by an ambulance & I still had to wait. I was screaming the nurse thought I was faking until I passed out. I was glad I got her fired
Shame😮 on them treating him like that
And for this very reason my husband is dead! I'm so frustrated and annoyed that CARE is not applied and Care Plans not followed! I am so disappointed with the lack of love and care of 'some' hospital care professionals because as busy as they are, just a pause, care and listening could have saved his life! And Yes! I'm very angry because nothing can be done for him now.
This is the same situation I went through in Royal Liverpool Hospital. They refused to give me any meds for my pain. I had to go home myself on a cab to use my prescribed meds and manage my pain. I’m in a situation where I rather suffer in pain than go into hospital.
Please try plant stem cells very efficient to eliminate vaso occlusive plains for months
Y’all see how he couldn’t really cry and express truly. That’s to try not to throw yourself in crisis.
Right! But healthcare workers take that as us being fine since we’re not wailing out loud
This happens in Jamaica as well. The battle is between those who understand what sickle cell is about and have first hand knowledge of it and those who don't know and don't have first hand knowledge about it. If they were to see for themselves the daily struggles of a sickle cell patient, they would not be punishing patients by withholding vital assistance.
All major Hospitals need a section designated for sickle cell patients. The staff needs to be trained and knowledgeable in all aspects of the disease.
My children are sickle cell.please try plant stem cells very efficient to eliminate vaso occlusive pains for months
I was diagnosed with sickle cell trait during a sporting competition and holiday in America in 1984 on my return the NHS Doctors here in the UK dismiss it and then again I get diagnosed in 1996 after minor surgery they couldn’t decide whether I had trait or the disease, I am disgusted with the NHS in 2021 it finally confirmed I have Sickle Cell Trait
I have cerebral palsy and sickle cell trait I do have pain bouts, sometimes I am left in A&E for hours before I am seen. Sometimes I don’t even get a blood test just pain killers, and sent home to organize my pain relief medication. Every time now I have to contact my GP and ask him if I can take extra pain relief so that I don’t have to go to hospital as I do not know how I am going to be mistreated. I have a wonderful GP who helps me manage my pain level at home and regular blood tests when needed.
My pain bout starts when I struggle with muscle tightness pain they always appear in the same place.
It really is so sickening n so heart breaking how medics treat those with full blown sickle cell and the trait is disbelieved when we show up in pain. I’ve been disbelieved since childhood when gps told my mum it was growing pains yet those same stabbing bone pains and fevers and swollen limbs have continued till today and I’ve had multiple tests growing up until 2020 where my body got worse and I suffered the worst sickle cell trait crisis of my life, was left disabled for 3 months with crisis that began on my stomach and arms and then my full body went into crisis and then because I kept calling my gp after the sickle cell society in London got in touch with me and a local sickle cell thalassaemia centre genetics counsellor advised him of what I was going through, my tests were already in the system from all the years I’d suffered, I ended up having a stroke and other complications because they left me untreated for so long. Still constantly unwell now because of complications of being left untreated for so long! There’s a huge racial bias within healthcare globally! It is disgusting how sickle cell haemoglobinopathies are treated or rather mistreated. Sending blessings your way ❤🙏🏽
@@symptomaticSCT Thank you so much for your reply I found it extremely heartwarming. I am so glad I have found somebody else who has been having the same issue as I have. I shall carry on trying to campaign for better treatment equality for all whether one has sickle cell disease or traits. One must be treated equally and believed.
What makes me so cross I have to real beg for a blood transfusion I know my own body when I don’t feel very well.
At a point I was told to walk because the couldn’t push my chair even though I was in tears and in pain. The nurse said I was lying about my pain. This is a case of racial discrimination which in turn affects method of treatment.
Damn...did you report them..
This breaks my heart🥺❤️
5:10 is as REAL AS IT GETS!!!! I'm right here with you Bredren coming from Ohio in the States.⁹ We need to report and Talk more and STICK TOGETHER LIKE WE STUCK!!!!
I’ve been in situations where the doctor thinks I’m there for just pain medication because I’m not crying or whatever I’ve delt with sickle cell my whole life I’m an adult so I’m use to some of the extreme pain and hold back tears, luckily for me I know 2 board members of the hospital I go to so when they think such things I send a text and they usually get in trouble and give me a new doctor who understands or treat me themselves. I don’t understand why a lot of doctors are like that and some refuse to go by the pain plan for no reason at all I feel like some doctors get their anger out by seeing others suffer.
Ppl with sickle cell that live outside London are really going through it 😩
Please try plant stem cells very efficient to eliminate vaso occlusive pains
No lies there
This z the pain ma son z going through now
Been there, I take my meds with me & self medicate when the doctors or nurses don't want to help. Although I must admit Central London Hospitals have gotten a lot better & have had a lot more training on sickle cell & how to treat patients.
Hello. I also would like to make a report... how to do it?
Please try plant stem cells very efficient to eliminate vaso occlusive pains for months or even years
Too bad
It’s the same way here in america. Because of drug addicts people with legit chronic pain are loosing our pain relief which causes us to loose our quality of life. It’s even worse in people of color . Though I’m only 12 I know this as I have chronic pain and several chronic illnesses and I’ve seen it firsthand when we bring up pain we start to be treated as if we’re addicts just looking for our next fix though that isn’t true or right. Our pain medication doesn’t make us high nor does it cause us to check out from life. With chronic pain patients our medication helps us to live and participate in life rather than just sitting around existing. Everyone really needs to learn this information as some people believe the lies and propaganda that is being told about chronic pain and pain medication.
💔💔💔
😭😭😭😭
Please take plant stem cells To prevent the pain they are very efficient
Where i live in the us they've treated me like a drug seeker since I've been a child, like it's affected my body so badly and the improper care makes me very depressed idk what to do I can really so much 😔
Mujhe bhi sickle cell hai bahut pen hoti hai 1:42