Sickle Cell Disease: a battle for equality, justice and respect | Ahmar Zaidi | TEDxDetroit
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- เผยแพร่เมื่อ 25 มิ.ย. 2024
- What led a 46 year old Haitian artist to being kicked out of the hospital in the dead of winter? What led him to joblessness and homelessness? Part of the answer was in his blood...but most of the answer is us.
Dr. Ahmar Zaidi is a pediatric hematologist who focuses on the care of people with sickle cell disease. He works at the Children’s Hospital of Michigan and is involved in research looking at pain in sickle cell disease patients. This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at www.ted.com/tedx
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Thank you for sharing his story, as a Sickle Cell patient, I can relate 100%. There is the horrible suffering from the Sickle Cell, and then the terrible pain caused by humans so called medical staff who treat you so awfully that you'd rather physically crawl back home if you could and suffer in agony at home.
Thank you for helping people understand what it’s like to live in my shoes. At 32 I’m still trying to find some dignity and a way to support myself with a community that has no idea what I’m dealing everyday with my health issues. And it’s even worst when your own parents and “family” don’t care and just want you to stop bothering with your illness. Or want you to grow out of it all ready.😢😢😢😢
I'm sorry that your family don't understand you don't grow our it. Just pray it doesn't make life short.
My father had sickle cell. He would tell me stories of people not believing him about the crisis he went through. When he was young back in the 50s and 60s doctors didnt know much about it. Because on the outside you look normal. But on the inside its pain. I remember watching all the pain meds he had to take in order to function normally. When other people would take 5mg pain pills his were at a 50mg or better. Which is why I give no respect to people who dont like to work or have excuses for not doing it. I watched a man who could have been on disability get up everyday a will himself to work. Luckily for him he decided to be an emt so he could know what he was taking and get in good with the doctors so they could prescribe him the proper meds
@@macjr2001 its horrible. Sorry a about your father. I wonder do all African have sickle cell disease? Did you inherit it from your parents? I come a cross medical video and iam very interesting in the subject? Iam from east Africa I dont think I was sick about this disease.
@@Rahimeeh you have to inherit the gene from your parents. One from both parents in order to be born with it. Thanks for asking
Same! We shall overcome this 💪🏼
Please continue to speak on sickle cell. Thank you for your TED Talk
Am going through bone crushing pain right now and am surprised I woke up this morning. The thought of calling the hospital to have my pain managed is defeating, the attitude of the compassion-less nurse, the thought of how healthcare professionals perceive coping mechanisms as not matching your level of pain, that question of from a scale of 1-10 rate your pain, the describe your pain question..............so I stay at home and suffer in silence and have my basic right infringed upon. Please don’t get me started on employers (I work for the NHS), how do I explain over and over that I cannot control this thing, people with coughs and colds who are just lazy to the bone get more empathy than I do just because they are at work. Quantity vs quality, absenteeism vs presenteeism. Thanks for taking on this fight.....
I so sorry to hear about your pain. My child has it too. I try my best to introduce oxygen to the body, keep the immunity up..juicing 3 times a day with a good diet, and making sure they drink about 3L a day.
I've tried to ask the hospital about oxygen therapy, flat out NO. The patient is not an acute patient is always the answer...but in the hospital the first thing they do is put the kids on Oxygen..
I'm sure you know all about this.
But please keep strong xx
This got me in my feels. That horrible feeling when you’ve got tell the person interview you that you have Sickle Cell.
My father had sickle cell. He would tell me stories of people not believing him about the crisis he went through. When he was young back in the 50s and 60s doctors didnt know much about it. Because on the outside you look normal. But on the inside its pain. I remember watching all the pain meds he had to take in order to function normally. When other people would take 5mg pain pills his were at a 50mg or better. Which is why I give no respect to people who dont like to work or have excuses for not doing it. I watched a man who could have been on disability get up everyday a will himself to work. Luckily for him he decided to be an emt so he could know what he was taking and get in good with the doctors so they could prescribe him the proper meds
Thank you so kindly for speaking about sickle cell disease. Praying we continue to make it 52 yrs old!
How are you doing it ?
I have HB Ss..in tears. I hate the stigma attached to this horrible disease! Thank you for doing what you do!
It’s 7:13 am. I haven’t slept yet. I cried real, profoundly deep and real, sorrowful tears watching this. I’ve spent my whole life trying to understand this myself, and to those around me. Thank you.
thanks for your advocacy and passion to help our community Dr. Zaidi
Rest in Peace
I would like to say Thank you from UK. The battles my husband goes through, bring me to tears. My husband is now 53 years old. In 2015 l nearly lost him, but he eventually went to Addenbrooks Hospital in UK. He still has battles, but at last after all these years is treated with the respect he deserves. He is my warrior. No one should have to suffer pain like they do. I feel useless at times, but l will fight his corner all the time.
Hertz we made friends with via Facebook, afraid he passed away a year ago. He was an amazing beautiful soul. Never to be forgotten.
Thank you once again. I have forwarded this to our Heamotogist as we had a meeting last week about equality and how some are still getting treated in UK. Its appalling.
Ok. I'm tearing up-and I am a paediatrician that has treated hundreds of sickle cell patients. I totally agree with this presentation, we in the health services need to do more for our patients
Thank you for this amazing TALK! We need more people like you, fighting for our brothers and sisters living with Sickle Cell Disease.
A million thanks for having Dr. Z conduct this Ted Talk! I wish it was longer to explain more in depth what living with Sickle Cell Disease is like. Both my children have it....it would take hours for me to share story after story of the discrimination faced as well as hundreds of hours missed of work and school! This disease is no joke!
Thank you for enlightening the people of our continuous fight living with this condition thank you for being on our side
This is awesome and I'm looking forward to better treatment soon!!!
I am a Sickle cell patient. I've just woken from a dream in excruciating pain. I've been suffering for days. This disease is pure brutality and torture.
Bro you got this DOWN to a T.
ITS SO CRAZY HOW IM HAVING TO START LIFE OVER AND OVER AGAIN EACH TIME I GET ADMITTED TO HOSPITAL, EACH I HAVE A CRISIS HAVE LOST JOBS AMAZING OPPORTUNITIES IN MY CAREER PATH.
Silently suffering.....I felt that!
All I can say is Thank you Dr. Zaidi. Thank you all the way from DC. The way you described this disease need to be in a text book. It was perfection!!
Thanks you sooo much for helping us tell our story. You describe so clearly and eloquently what I fail to describe to others. Thank you for stepping into the ring on MY behalf.
💯 Thanks for the message Dr. Z... You spoke the truth. I have Sickle Cell SS. I'm going to try this new treatment this week called Adakveo.
What is that and did it help?
It is the most direct and understandable about the disease and prayerfully others will begin to understand more.
This has been the most touching and inspirational TALK I've ever heard in my whole life living with sickle cell disease. Just within the first 2mins of the video, I almost cried as I truly understand the direction you're coming from. I can see and feel the passion in you working for something that you desire to make a change on.
It is not easy living with an inherited disease that you have no idea of. And this has been the life for us, as sickle cell patients. Pls, Dr. Zaidi continue with the good work and advocacy.
thank you. truthfully
This is what sooo many “so called doctors” need to see because I know living with this desease is mostly a struggle because I can't get the help I need just because the color of my skin.. I live in East TN & these doctors here at the ER's especially..choose to say I'm not in pain because they think I want drugs & I've even been told by one who didn't care to help that I was faking & didn't have Sickle Cell.. I've also been turned away by Hemotologists just because I have Sickle Cell.. What type of bull 💩 is that!! They make things worse!!
My advice is for you to pick up some kind of medical training. That way you can learn what to say to the doctors. My dad had to do that just to get the meds he needed for his sickle cell
AMAZING talk Thank you for speaking out for Us let’s Pray we are better herd and understood
We need more Consultants Doctors and health care professionals to do that party here in the UK were attitude and treatment is Appalling and Deteriorating severely it’s become extremely concerning 👏🏾
Oh! My beautiful daughter has sickle cell. God bless you and your compassion for others. Its needed and appreciated. Thank you
Please research bone marrow transplant and stem cell treatment. God bless your daughter.
a great speaker and important message.
I stay in Detroit and have sickle cell and the way we are treated really is unreal I'm really at my braking point and don't know how I'm going to go on I went to the hospital last night and went through this not being treated cause I don't look sick so I have been just having to go on and deal with this my son just graduated high school and I don't know how much longer I can deal my mind is so messed up I don't know what to think
Nice talk Doc. If this situation is like this in developed countries as America you can imagine the condition in 3rd world countries like Nigeria
Thank you Dr Zaidi. Thank you
Thank you 🙏🏿
Amazing discussion!! Great job...
Respect 👌🏿
Beautifully said.
Wow cudos to him really
Hello Dr. Zaidi, I love your work. Please can you permit me to share your videos on my LinkedIn page? I am a warrior .
Thank you. This story is told by me and others like me but is disregarded and invalid. Maybe an outside perspective will help other doctors understand that bias and phobia has no room in the medical system. We go through this everyday people not believing us.
Thanks for this talk. It's not just USA unfortunately... Every time I enter an European ER I get that look. The look of what's wrong with her.... Is she exagerating, to get treated first or for drugs? It's not easy. I always prefer to stay home and deal with the pain unless it feels like I'm dying.