Sickle cell anemia patients react to breakthrough treatment
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- เผยแพร่เมื่อ 10 มี.ค. 2019
- A cutting-edge clinical trial made a breakthrough in its effort to cure sickle cell anemia. The painful genetic disease affects about 100,000 Americans every year, mostly African Americans. On "60 Minutes," Dr. Jon LaPook followed Jenelle Stephenson for more than a year as she underwent an innovative kind of gene therapy at the National Institutes of Health. The therapy uses HIV to treat patients, but the virus is weakened, so it cannot cause AIDS. LaPook, who watched his report Sunday night with four sickle cell anemia patients, and Stephenson join "CBS This Morning" to discuss the remarkable trial results.
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As a parent of a sickle.cell.patient...this video breaks my heart. I can't help but to cry and but I can't wait for this trial to be availble to everyone.
Wow I suffered a lot with criss pain just took 4Aurocet-P for pain and I am 50 years old I will be glad to welcome a cure thank God for this His mercies know no bound
Have you visited the African continent, specifically where your ancestors came from? if you have Sickle Cell you need to visit that regions of the word where your people came from and get exposed to what your ancestors were exposed to. Malaria, to build up your immunity to Sickle Cell. These corporations just want to make a buck off you when nature have the answer.
This is like people with very dark skin living in northern climates who suffer from rickets and other illnesses because they aren't getting the proper vitamin D or Ultraviolet radiation from the sun. i'm sure they would call having very dark skin a disease if they could.
@@patriciacole3892u sound like u giving up... be my guest but I wouldn't ever tell or advise a person black or any other race to risk taking in another disease to fight off another disease... get a second opinion
@@KillahManjaro I'm sorry, but I dont get what or how going to Africa and getting exposed to malaria helps cure sickle cell/s.c. naturally. I have s.c., and have researched it deeply. S.c. was the bodies genetic evolutionary response to malaria. A person with s.c. is HIGHLY to completely immune to malaria.
@@savagekeyz408 You've never felt the pain of a crisis, the pain from a s.c. crisis is on a diff level from what a normal person could feel. When you want to just "be normal" and not worry about having a crisis every day. I too would have jumped at the option for that treatment when I was younger...s.c. pain will make u consider death just to not have to live with this type of pain...
Having 2 close friends and a family member that have Sickle Cell Disease..it is a HORRIBLE way to live, pain meds do not work often..people do not believe them MOST times..so sad😢
Shay Love I know how you feel. I just lost my dearest cousin to this horrible disease. I hope they find the cure. This painful disease is horrible
@@YMgirl85 so sorry for your lost!😢..🙏🏾praying one day there will be a cure to this dreadful painful debilitating disease.
This story brought the biggest smile on my face. I am so happy for her. Live long and prosper beautiful woman.
I Enjoyed Being Apart Of This‼️🙏🏾
Love the scientific research that provided this trial and it's outcomes.
I’ve seen people struggling with this horrific disease, THANK GOD FOR THIS MIRACLE 🙏🏼😂👏🏻
its science not god
mohamed ali, even a small bit of homework shows that there is no inherent conflict between-most religion and science. Nevertheless, you are allowed to believe whatever like.😘
@@adisciple9485 even a small bit????
God did not do this, Science did. God is not real and it's been proven as a fact there is no God.
Jarid Gaming, please enlighten me with the facts: Who, when, where, and more importantly, HOW.
I suffer with Sickle cell Disease (SC) I'm 25 years young and eating healthy, exercising, and staying safe with my mental so I'm not stressing helps allot from me getting a crisis. My sickle cell has been mild because of personal issues of dealing with being homeless it has caused times for me to end up in the hospital. Everyone's experience and level of sickle cell crisis is different. Personally I wouldn't recieve this because its not a cure it's a test to see of it works and people dont know what happens in the long term. I was born with sickle cell disease and I'm confident it was for a reason and I am strong enough to live with it so when I die I will doe with it. Eat healthy, stress less, exercise, watch what you put in your body, yoga, meditate, be at peace and I believe that's a healthier way to live with sickle cell. People today are 80 and up living with sickle cell and I know I dont need a scientist to test on me. I have faith that I'll ne just fine. Times do get hard but in every dark cloud theres a sliver line, and my mind remains positive about my struggle with sickle cell. I will survive!
Everyone dealing with sickle cell may not agree and I respect that, just commenting my opinion and thoughts for myself where all different.
Have a great day, and do what you feel is best for you and dont let no one make you feel bad about that decision cause it's your shoes not theirs! ❤❤❤
I dont trust pharmakeia. My 5 year has sickle cell and we keep her away from gmos. We also keep her hydrated with water constantly and she takes natural supplements. Fortunately by Gods grace she hasn't been in and out of the hospital throughout her life. I commend you for taking the alternative route. Keep doing it.
You sound like you’re doing ok. Hru today?
This is incredible, yea the HIV thing can make someone nervous but the idea of relief brings tears to my eyes and joy to my heart
I've been through the trauma of being in agony, & doctors assume I'm faking to try to get drugs. It's demoralizing and depressing and maddening. Our health care system needs a HUGE overhaul, but at least wonderful miracles like this are happening, too. I hope the folks on this piece who're not all that excited can open their hearts to a real cure and let go of their struggles. Sometimes, we all get so accustomed to pain and having everything be hard, it can be frightening to consider being free of pain and letting things be easy. We all deserve a good and healthy life, and may we all be blessed with that!
Ani Bell, amen 🙏🏼
This is wonderful for the people suffering
I have sickle cell anemia and I am trying to create awareness on my youtube not just for me but also for others struggling with this disease I would be honored if anyone would like to subscribe to my channel
I’ll take my sickle cell and leave. Call me when you find a cure when that doesn’t involve giving me a deadly virus. Disabled or not.
RIP Prodigy
As a person that has Sickle Cell, this scares but excite me.
Same here!
Best of luck to both of you all!
zSib thank you 💋
It should
I can understand the skepticism and worry from the other sickle cell patients. Though I'm happy to hear about the success of this gene therapy treatment on her. I hope this will be the case for many others to come.
If any doctors that are from Houston Texas and y’all are watching this please for the love of God get this type of information to your supervisors because I hate to see people being sick because of the sickle cell anemia it definitely brings tears to my eyes to see people going through the same pain especially kids in Børns babies smh
I can’t help but think of Tuskegee 👀. Just saying . 👀
I was thinking the same thing.....
True dat.
THANK YOU! A few thoughts went through my mind as well....ETHNIC CLEANSING! STOP EXPERIMENTING ON OUR PEOPLE!!!
OMG! I was thinking the exact same thing. I was waiting on one of the patients to say that as a follow up to HIV. Black folks, infectious disease and trials haven’t gone well in the past. Though I hope it does lead to a cure. Living with pain dying young is horrible.
Riva Stewart concern is what is being told now and what will be done later as other institutions gets olo
Sad but true. They don't believe you are in pain. Everyone is not a drug addict. I saw to many people almost lose their life to this crucial disease. All medical practice and hospitals needs to have training on this painful disease so the person with sickle cell won't be distriminated against when going to get help.
Great news god bless these researchers
Wow, I just left the hospital from a crisis. It’s nice to have hope.
When they think you’re seeking drugs do what I did. Call them out on it and tell them you want a drug test. See how fast they switch up and check their own biases
....so, where are we now with this? 5 years ago now, how far has this flown?
Blessings to all :)
I have sickle cell and I'm quite skeptical about this proceedure. The doctor sound too Hollywood to me. If it's adopted in the UK I might change my mind as doctors here have no profit incentive and they don't do showbiz stuff. What are the peer reviews and comparative studies. None of that that was mentioned. Showing judo classes on talk show don't cut it for me.
TJ Fasan your suspicions are understandable. It’s good to be skeptical however in this case there is a lot of info you can look into about gene therapy that I’m sure will satisfy your suspicions. I hope you and many others can one day find yourselves finally cured of sickle cell anemia.
I'm always very happy about new breakthroughs in medicine.
Yaaaaas!!
Praying that this breakthrough will happen for every Sickle Cell Anemia patients.
🙏🏽 my son is 20 & have sickle cell anemia & this has been a hard journey..
@@nikkid1537 I understand you, because both of my sons were born with sickle cell anemia. One died at 7 yrs old. My other son is suffering he's 40 yrs. old. God has kept us through these hard times. The journey has been so hard. I will keep praying for all of us.
It will be gene therapy is just amazing
Thank you so much for sharing the information. 🙏❤️🤗
SHOCKING
I’m so glad people are working on this.I get the trepidation of the patients considering it’s so new.Super impressed: God is great
I have sickle cell anemia and I am trying to create awareness on my youtube not just for me but also for others struggling with this disease I would be honored if anyone would like to subscribe to my channel
Amazing
I go through the same when I and my sister go to the hospital
As health provider, you must address every complaint of pain as if they are real. You never judge. Always use nonjudgmental approach every situation, including pain.
It's horrible when doctors do us like this
How can we access this treatment please? We are desperate for help please
It’s insane that a hospital would doubt a sick cell patients pain
I’m pretty sure it’s because most of them are African America or people of color…
Damn if prodigy could've waited a little longer💯
Right, I have a friend that died exactly a month ago from it & wish she could have held on longer.
@Poetry Evans where is the basis of your opinion? Have you read the autopsy report to make such a statement?
I have sickle cell anemia and I am trying to create awareness on my youtube not just for me but also for others struggling with this disease I would be honored if anyone would like to subscribe to my channel
All he needed is more iron
Am From Ghana and I needed help seriously please
I'm not one of those people who try to create a brotherhood over any old thing, but I can't help but feel a certain connection to someone with sickle cell because it runs very strong in my family. TBH though I think I'd rather stick with the sickle cell then have HIV put into me. The doctor said the part of the HIV that allows it to infect is gone. I would love an in depth explaination for that.
Why not have the (harmless) HIV strain inside you? You take flu shots, don't you?
Yes, this sounds like the Syphilis Experiment on Black people all over again. HIV is a patented virus, so that was another experiment. I feel for those who have to trust doctors with their life all the time. It's heartbreaking.
What people don’t understand is that HIV is very manageable today. Many doctors would say that they would choose having controlled HIV over having uncontrolled diabetes in a heartbeat.
What kind of world are you living in, HIV is manageable? lol I can live without have kids? sounds like some well organized population control gimmick.
The best course of action for these people is to go back to where there ancestors originally came from and expose themselves to Malaria.
Sickle Cell is not a disease. Its a genetic adaptation by nature given to people who live or once lived in areas that have malaria.
www.nature.com/scitable/topicpage/natural-selection-uncovering-mechanisms-of-evolutionary-adaptation-34539
@@KillahManjaro what basis do you have to keep saying the "go back to Africa" bs you keep commenting? I actually have Sickle Cell, if presented with a viable possibility of a cure, damn near any Sickle Cell patient would take it. The suffering is enough to take any option
@@Rsmith420 Try drinking structured water. Drinking structured water has proven to unclog blood cells and promote a healthy blood flow. This video explains it and shows proof at 7:54
th-cam.com/video/RuQKBM9YVAA/w-d-xo.html
I would easily do this to get rid of my sickle cell people don’t understand the pain we go threw! Good job where do i sign up 👏🏾
The cure is more iron
Frankin Howard not a cure but ok
God bless you guys a very very strong. See good things. Do happen.. thank God for these doctors that really care about patients. Because a lot of us .myself included,, I survived a bad stabbing two horrible car accidents. Trying to experiment when I was a teenager stealing cars and doing dumb things. Why I say definitely our God is awesome
Now for juvenile diabetes, and so many other diseases.
Stop giving a "God" credit for what people did. It took time and hard work to figure these things out. What do you have to say to the people who have already died and suffered from this disease? Now all of a sudden "God" wants to fix this and you give him credit? I just think it is disrespectful to the people who worked so hard to make these people lives much better.
@@steven19767 stop. Allow us to believe what we want to. Leave us be. God bless you.
The video of the vein with the blood cells clogging up is incorrect. It’s SICKLE CELL Where were the sickled cells? You’re information is a bit misleading. I have had this done and I’m the first patient and it failed. I would love to share my story.
Please share your experience please
You seem to be uneducated on your own disease. Sickle cell CAUSES clogging (clotting) of blood cells in veins, and that is what they were trying to portray.
zSib yeah but the blood cells are in a sickled shape which causes them to clump up. The ones in the graphic were normal and circular so it didn’t make sense that they would clump.
zSib If you’re going to attempt to check me then YOU might want to educate yourself. I know exactly what I’m talking about yet clearly you don’t. I wouldn’t have been in newspapers, magazines, tv shows, and part of my life’s story permanently displayed in hospitals if I didn’t know what I was talking about. I don’t appreciate being talked down to when it’s you that is uneducated on the topic.
Momore Alade Thank You I appreciate you defending my comment and explaining that.
I need help
The illustration ddnt even have sickle shaped blood cells.
Amen Amen and Amen
Gene Therapy is just awesome man, its like magic
So they were testing on him
What be tricky is some of these hospitals wit these break though don’t take out da town Medicaid which is not helpful for ppl that’s not a resident
Hmmmmm......🤔
What’s the downside ?
You get hiv
@@g.berwald5312 Not really? If you knew how viruses work, you wouldn't be saying that.
I am Amazed! 😍😍
I never thought this geno break through would happen in my Life Time. If therapy continues to be positive with Sickle cell... other diseases like the Cancer gene will be eradicated!!🤩💜🤩💜🤩
#HOPEFORACURE
#SICKLECELLCURE
#ENDCANCER
Positive
I am patient pls cure for me
Author Ashe died from a blood transfusion, got aids
Hi Iam 40. I don't suffer sickle cell. I was born with it but got cured at the end of my first year of birth
May i ask how u got curred my son was diagnosed at birth now 9 months
Sounds like Mad Science to me.....
Read these books:
Bad Blood: The Tuskegee Syphilis Experiment, New and Expanded Edition
and
Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present
I'm sorry....."Never again"
Fake
GTFOHWTBS
Really😳😳When are we going to stop letting another race work on our bodies! Especially people who have been experimenting on us. They not built like us but they know how our body works. We got to start taking it back to nature and learn how to heal our selves! #Drsebi #Yahkiawahked
Am From Ghana and I needed help seriously please
Am From Ghana and I needed help seriously please