Відео

My son might need it.. hopefully everything will work out

I care for sickle cell patient on a daily basis and this video makes me so emotional. EBT is indeed a game changer.

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.

Thank you Nush iam a sickle cell sufferer and it’s so hard to manage the condition I watched your UA-cam videos God bless you 🙏🏽🙏🏽🙏🏽🙏🏽🙏🏽❤️❤️❤️❤️

This shall be my partner’s testimony in Jesus name! His first transfusion today and I’m hoping God restores his health and take away his pain! Amen

Mujhe bhi sickle cell hai bahut pen hoti hai 1:42

My daughter just did this procedure yesterday

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!!!!

Shame😮 on them treating him like that

This is infuriating! They have care plans. Implement the care plan. How do they not know what to do?

Hey guys you have a lot of courage!!!! I'M A CHRONIC SICKLE CELL PATIENT AND I AM A RARE ONE... I ONLY MEAN WHEN I HAVE A CRISIS I BECOME VERY SILENT...I CAN TOLERATE HIGH LEVELS OF PAIN I'M 53 AND IT IS NO EASIER FOR ME TO SAY YOU MUST STAY PRAYED UP FOR THIS DISEASE...IT'S TRICKY

Y’all see how he couldn’t really cry and express truly. That’s to try not to throw yourself in crisis.

Hello I'm a parent to sickle cell patients please try plant stem cells you Will thank God

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.

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.

A big challenge in Uganda

Please take plant stem cells To prevent the pain they are very efficient

Please try plant stem cells very efficient to eliminate vaso occlusive pains for months or even years

When's a good time to do workouts?

I just want to gain weight

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

Where are the advocates? Its much more than 300 babies a year this data is very old Calvin.

💔💔💔

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.

Hello. I also would like to make a report... how to do it?

Hello. I have a report to do.

This z the pain ma son z going through now

Also a patient of sickel cell from pakistan 🥺

I want to tell my story

I wish doctors and nurses are aware of how much pain we’re in. We need pain meds asap!!

Had my booster in June lol

I'm a sickle cell patient, I've had my vaccines... just waitx for the booster

Speaking out does help a lot keep uploading more videos about how you are managing if possible stay strong and stay bless

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 😔

Glad to know that people do care about sickle cell patients.... I'm equally sickle cell

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.

Happy to find this

Thanks for sharing your story, it’s motivating me as I study to become as doctor

This is so interesting and enlightening.

I just heard about this procedure a day ago. Trying to research it and I find this channel and support society. I am grateful. How do I get to be a part of this, and get more information.

See those long break intervals is a sign someone knows what it means to have sickle cell I literally want to shed a tear

Inspiring indeed.. m joy from Nigerian and in nigeria. Would like to know more about this procedure. Am a scd patient 😌

Ppl with sickle cell that live outside London are really going through it 😩

Still going through the same thing after all this time. It’s not just racist, it’s torture and agony

All of this for us to still go on and be treated badly. It’s torture and agony at this point

Not enough attendance

This breaks my heart🥺❤️

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.

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.

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.