Sickle Cell Awareness Thread: Sickle Cell Awareness Month 2024! UPDATE: NBA2K5 SICKLE CELL BALL!!

bkqns718

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I heard it's like 2.2 million smh

crackers will never care
Don't get caught up in the price too much.... my wife works in the space she told me usually this new fda treatments tend to be on the higher side it will decrease over the course of time. The cost of caring for sickle cell crisis in a ER is like 500k/per year per person or something like that.
 

totto

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Im keep a eye out for vocational rehab or any form of treatments for fl]folks with no money imao i need this badly.
 

D24OHA

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I can understand the backlash and not wanting to be a punchline......

But I think the part SNL didn't say was

"Some ppl are not interested in that experimental shit."

As shown by reaction to the covid vaccines.....

And as potentially dangerous as the Vax may have been, there are a lot of unknown dangers with editing your DNA.....

You edit a strain for cancer and mfkrs may have weekend retinas and go blind.....

There's just so many genes/ features tied together and we have no idea how manipulating one can affect others
 

playahaitian

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Helico-pterFunk

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TheBigOne

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My little boy was born at Johns Hopkins to a mother who could barely feed herself and the other kid she already had. My son was the father. He had a crisis on day 1 and we all realized that he needed special attention and resources. We politely requested that, rather than give her child support for 18, that she let us, with a big house and health insurance. take care of him. She agreed and practically walked out of his life. He had his spleen removed when he was 3, and practically did away with SC crises. He still had them, but much less frequently. They started monthly infusions at age 12. Finally, at age 18, just after he finished HS, he had a stem cell transplant, made possible because his father was a match.

He is SC free at age 25, recently married and completing college, since he had to put everything on hold for 2 years while he prepared for the transplant.
 
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bkqns718

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My little boy was born at Johns Hopkins to a mother who could barely feed herself and the other kid she already had. My son was the father. He had a crisis on day 1 and we all realized that he needed special attention and resources. We politely requested that, rather than give her child support for 18, that she let us, with a big house and health insurance. take care of him. She agreed and practically walked out of his life. He had his spleen removed when he was 3, and practically did away with SC crises. He still had them, but much less frequently. They started monthly infusions at age 12. Finally, at age 18, just after he finished HS, he had a stem cell transplant, made possible because his father was a match.

He is SC free at age 25, recently married and completing college, since he had to put everything on hold while he prepared for the transplant.

I am happy to hear that the stem cell transplant work for the him. I am always looking for real life/personal experiences with people that have went through the process
 

Goingmark40

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My little boy was born at Johns Hopkins to a mother who could barely feed herself and the other kid she already had. My son was the father. He had a crisis on day 1 and we all realized that he needed special attention and resources. We politely requested that, rather than give her child support for 18, that she let us, with a big house and health insurance. take care of him. She agreed and practically walked out of his life. He had his spleen removed when he was 3, and practically did away with SC crises. He still had them, but much less frequently. They started monthly infusions at age 12. Finally, at age 18, just after he finished HS, he had a stem cell transplant, made possible because his father was a match.

He is SC free at age 25, recently married and completing college, since he had to put everything on hold while he prepared for the transplant.
wow...that's huge and a blessing bro. good to have a real life experience on the subject
 

TheBigOne

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I am happy to hear that the stem cell transplant work for the him. I am always looking for real life/personal experiences with people that have went through the process

He was in a program that required quarterly check ups for five years. He was all clear after one year, and now hasn't seen a doctor for two years. Except he's planning to go to school to be a physician's assistant and has been doing 12 hour shifts at the training hospital
wow...that's huge and a blessing bro. good to have a real life experience on the subject

 

playahaitian

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Has the history been done on sickle cell? Did sickle cell exist before slavery or was that something with the combination of black and white cells creating sickle cell?

I have had experts dispute this but generally speaking this is the agreed upon origin story of it being rooted/related to malaria long long ago way before the slave trade.

It is also not a "black" disease.

It has a high amount of Middle Wastern and Mediterranean. Very high. Thalassemia is the close cousin of sickle cell.

But for many reasons its been labeled as such. And as much as it is shamefully underfunded there are some benefits of it having a black identity.



 
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godofwine

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I have had experts dispute this but generally speaking this is the agreed upon origin story of it being rooted/related to malaria long long ago way before the slave trade.

It is also not a "black" disease.

It has a high amount of Middle Wastern and Mediterranean. Very high. Thalassemia is the close cousin of sickle cell.

But for many reasons its been labeled as such. And as much as it is shamefully underfunded there are some benefits of it having a black identity.



So what you're saying potentially is sickle cell was developed as a way of naturally dealing with or protecting the person from malaria or because of malaria. And Middle Eastern countries with mosquitoes still potentially have malaria and are affected. Is that it?
 
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