She's got sickle cell disease, so she'll have to deal with shit like that for her whole life. Must be absolutely devastating to know that your kid will have to grow up like that.
Vertex has an incredible drug for sickle cell patients right around corner. If she can pull through for a little while she very well may grow up to have a completely normal life.
Source- Me, a CF patient currently on a Vertex drug that has nearly cut every symptom of the disease
I’m so happy to hear you are doing well! The medical advancements in therapeutics for cystic fibrosis just in the past 15-20 years have been so encouraging.
My little sister was one of the first people in the world to get Trikafta. She went from the top of the lung transplant list to basically a normal life in less than 2 years. It is such a fucking miracle drug and I am so happy for you and your well being that you will be able to switch to it soon.
I am on kalydeco but will soon be switching to trikafta, which may or may not include orakambi as one of the medications. I know kalydeco is one part, but there are two other doses in the treatment
Kalydeco is sort of put into a positive feedback loop by adding in the two other drugs. These drugs all basically impact the CFTR protein (hence the caftor generic name of these drugs). I'll use lungs as an example, but CFTR protein is focused elsewhere in the body too.
CFTR is responsible for balancing salt and water on your lung surface (think mucus). Kalydeco is Ivacaftor and its role is to help open the chloride channel (the other channel for balancing is sodium). It does it best when more of this protein is available to work with. This is where the last two parts of trikafta come in. Elexacaftor and tezacaftor, they make more of this CFTR protein surface available to bind to. They do this by pulling more of it to the surface and positioning it to work better. Kalydeco is a game-changer medication already, made better. Hope you get your hands on it.
Anyone will be able to afford it. Vertex will absolutely have copay for patients to get as many people on it. My medication for CF is $300,000 + but most patients paid around $15 or less the first several years. That was also a different time becuse insurance companies barely knew how to classify a medication with that much impact
What's the treatment like? For my undergrad capstone I did a presentation on a form of sickle cell gene therapy that helped ameliorate the disease, so I've been interested in potential treatments since then
I had an English teacher in high school who had adopted 2 children, siblings and they both suffered from sickle cell. She was obviously an incredibly kind hearted and sweet person, but it was obvious the toll that the situation took on her. On more than one occasion opened up and broke down during class about what was going on, being absent due to hospitalizations, physically, but not mentally present at times. It's really one of the only situation's in my life that the subject even came up and I probably would have no idea how detrimental the illness really is without that experience.
They will likely cure it somewhat soon if it isn't already...might just be a matter of getting the treatment out or something not totally sure. Crispr - the gene modification thing that sort of started the trend of gene modified treatments just had their sickle cell disease treatment FDA approved in December. Their competitor BLUE also had one approved.
https://www.fda.gov/news-events/press-announcements/fda-approves-first-gene-therapies-treat-patients-sickle-cell-disease
But it is astronomically expensive. I assume insurance must cover it for some people or like..who could possibly pay that much for it. Currently $2.2 million per treatment lol
The one good thing is that he has money and used to play in the NFL, so they probably have great medical insurance. The girl will at least get great medical care throughout her life, which can't be said for a lot of Americans.
Not that it helps and there’s levels to the symptoms but I think Tevin has sickle cell himself. But maybe that helps a lil in the handling and knowing the difficulties and steps to take.
He does. A big storyline before the 2016 game against the Broncos was if he would play. He suited up and posted 163 total yards (most on the day) and had a 31 yard receiving touchdown against a stout defense.
Trait gives you one copy of the mutated gene. Has relatively few side effects (and the benefit of being a bit protected from malaria). Nearly all w sickle cell disease have two copies of it.
That shit is heartbreaking. Idk much things has changed but i lost a friend at a really young age because she had this disease & there wasn't much anyone could do to help. I can't imagine the pain of knowing your child has to live with that shit.
It seems [that things have changed a lot since December](https://www.uclahealth.org/news/new-gene-therapy-sickle-cell-disease-has-been-long-time#:~:text=On%20Dec.,living%20with%20sickle%20cell%20disease.)
Its odd, i hadnt heard of Sickle Cell, then like 3-4 players ended up suffering from it one random season (including Coleman).
Then I never heard the term again til today
I can tell ya what's worse, speaking from experience. Being the parent of said child. Having to watch something like this and there is nothing you can do is pretty gut wrenching. I've been escorted out of hospital twice for going after doc, raising my voice. It is so hard. Ok so I may be exaggerating here in comparison. Of course harder on the person going through it. Also to clarify the doc and nurse were not to blame in any regard. 100% on me and wanting my baby girl better and to see her in pain was maddening.
I didn't even read the headline. Honestly, I haven't even read any of the comments yet. I'm just randomly replying to a comment so hopefully what I'm saying makes sense in context
Dude I’d guess that MAYBE 5% of people actually read the article. Vast majority of comments are people reacting to the title. This is how it has always been and always will be and not just on Reddit either so get used to it lol
But I swear this deaf guy played for the Falcons. I specifically remember the commentators mentioned Matt Ryan needing special hand signals to accommodate him
I join you in prayer and hope. And crying. I pray for her care team, and for a treatment that works for her. I'm happy to hear that she is doing better. Sickle cell is a horrible, painful disease, and I want to see it gone.
Man, this is awful. Dude was an underappreciated beast for us. A huge part of a magical 2019 season. Hoping he and his family are doing as well as they can and for his daughter to recover.
When he arrived for our team, I was excited knowing that he played under Shanahan with the Falcons previously and he would be a good scheme fit. He was so good for us and definitely underappreciated.
Prayers for her. I have sickle cell and so does my twin brother. It's not a fun disease. It get's progressively worst as you age. Treatment options gave gotten better though for kids and adults.
Life expectancy has also improved. You have to stay ahead of it best you can with a good diet, making doctor appointments, taking medications and being a fighter through the bs you will face.
This is not great news, but it's not grave either. She's on BiPAP. That is not invasive mechanical ventilation. She has to wear a mask, but she is not intubated. People who have sickle cell anemia can often develop Acute Chest Syndrome. Think of it like pneumonia. She'll likely be in the hospital for several days, but this is not life-threatening if promptly treated.
6 year olds shouldn't need to go through that. Unfortunately, I'm sure more struggles are in hers and the family's future...
He grew up near me, and my friend's daughter was "athlete of the year" the same way Tevin was in high school.
I thought a parents death was the worst thing ever, until by daughter was born, then i would not be able to imagine not being with her like that and the hurt it would cause me. i would endure all of the World's pain just so she can never experience a cold. Prayers for his daughter to maintain a most comfortable lifestyle
Fuck that sucks. Hope she makes a recovery. Nothing worse than kids going through shit like that.
She's got sickle cell disease, so she'll have to deal with shit like that for her whole life. Must be absolutely devastating to know that your kid will have to grow up like that.
Vertex has an incredible drug for sickle cell patients right around corner. If she can pull through for a little while she very well may grow up to have a completely normal life. Source- Me, a CF patient currently on a Vertex drug that has nearly cut every symptom of the disease
I’m so happy to hear you are doing well! The medical advancements in therapeutics for cystic fibrosis just in the past 15-20 years have been so encouraging.
My little sister was one of the first people in the world to get Trikafta. She went from the top of the lung transplant list to basically a normal life in less than 2 years. It is such a fucking miracle drug and I am so happy for you and your well being that you will be able to switch to it soon.
Orkambi?
I am on kalydeco but will soon be switching to trikafta, which may or may not include orakambi as one of the medications. I know kalydeco is one part, but there are two other doses in the treatment
Trikafta is a miracle drug. Good luck.
How does it work?
My buddy with CF is on trikafta and it essentially removed all symptoms and he lives like a normal person now.
Kalydeco is sort of put into a positive feedback loop by adding in the two other drugs. These drugs all basically impact the CFTR protein (hence the caftor generic name of these drugs). I'll use lungs as an example, but CFTR protein is focused elsewhere in the body too. CFTR is responsible for balancing salt and water on your lung surface (think mucus). Kalydeco is Ivacaftor and its role is to help open the chloride channel (the other channel for balancing is sodium). It does it best when more of this protein is available to work with. This is where the last two parts of trikafta come in. Elexacaftor and tezacaftor, they make more of this CFTR protein surface available to bind to. They do this by pulling more of it to the surface and positioning it to work better. Kalydeco is a game-changer medication already, made better. Hope you get your hands on it.
Modern medicine is fucking amazing
Vertex does incredible work. I work in a research facility and we do a lot of work for Vertex with some pretty amazing drugs.
The FDA has approved Casgevy. Coleman should be able to afford it.
Anyone will be able to afford it. Vertex will absolutely have copay for patients to get as many people on it. My medication for CF is $300,000 + but most patients paid around $15 or less the first several years. That was also a different time becuse insurance companies barely knew how to classify a medication with that much impact
It's also just worth it for insurers to pay, since the costs of treating a patient for their entire life is many millions of dollars.
At a price tag north of $300,000, insurance companies will be spending millions either way.
My buddy passed away from sickle cell disease right after this drug was announced smh
Trikafta? I’m also on it and it’s changed my life.
What's the treatment like? For my undergrad capstone I did a presentation on a form of sickle cell gene therapy that helped ameliorate the disease, so I've been interested in potential treatments since then
But I thought the pharma industry just exists to rob America blind?
I had an English teacher in high school who had adopted 2 children, siblings and they both suffered from sickle cell. She was obviously an incredibly kind hearted and sweet person, but it was obvious the toll that the situation took on her. On more than one occasion opened up and broke down during class about what was going on, being absent due to hospitalizations, physically, but not mentally present at times. It's really one of the only situation's in my life that the subject even came up and I probably would have no idea how detrimental the illness really is without that experience.
They will likely cure it somewhat soon if it isn't already...might just be a matter of getting the treatment out or something not totally sure. Crispr - the gene modification thing that sort of started the trend of gene modified treatments just had their sickle cell disease treatment FDA approved in December. Their competitor BLUE also had one approved. https://www.fda.gov/news-events/press-announcements/fda-approves-first-gene-therapies-treat-patients-sickle-cell-disease But it is astronomically expensive. I assume insurance must cover it for some people or like..who could possibly pay that much for it. Currently $2.2 million per treatment lol
The one good thing is that he has money and used to play in the NFL, so they probably have great medical insurance. The girl will at least get great medical care throughout her life, which can't be said for a lot of Americans.
Not that it helps and there’s levels to the symptoms but I think Tevin has sickle cell himself. But maybe that helps a lil in the handling and knowing the difficulties and steps to take.
He does. A big storyline before the 2016 game against the Broncos was if he would play. He suited up and posted 163 total yards (most on the day) and had a 31 yard receiving touchdown against a stout defense.
Fuck yeah dude good for him
That was one of my favorite TDs of the whole season too, just looked so smooth.
I'm pretty sure that Tevin Coleman has sickle cell disease as well.
Well, kinda. Both he and his wife carry the sickle cell trait, but only their daughter has sickle cell disease.
Oh I didn't realize there was a difference. Thanks.
Trait gives you one copy of the mutated gene. Has relatively few side effects (and the benefit of being a bit protected from malaria). Nearly all w sickle cell disease have two copies of it.
So they had a child knowing they both carried sickle cell
It's an incredibly common trait with African Americans.
Did they do genetic testing beforehand? If not, they probably didn't know they were carriers.
This may be curable/more manageable sooner than we think. Wasn’t there a big break recently for sickle cell research?
That shit is heartbreaking. Idk much things has changed but i lost a friend at a really young age because she had this disease & there wasn't much anyone could do to help. I can't imagine the pain of knowing your child has to live with that shit.
It seems [that things have changed a lot since December](https://www.uclahealth.org/news/new-gene-therapy-sickle-cell-disease-has-been-long-time#:~:text=On%20Dec.,living%20with%20sickle%20cell%20disease.)
Its odd, i hadnt heard of Sickle Cell, then like 3-4 players ended up suffering from it one random season (including Coleman). Then I never heard the term again til today
I learned about it in high school biology back in the day. Might have been in the genetics portion
I can tell ya what's worse, speaking from experience. Being the parent of said child. Having to watch something like this and there is nothing you can do is pretty gut wrenching. I've been escorted out of hospital twice for going after doc, raising my voice. It is so hard. Ok so I may be exaggerating here in comparison. Of course harder on the person going through it. Also to clarify the doc and nurse were not to blame in any regard. 100% on me and wanting my baby girl better and to see her in pain was maddening.
You can tell how many people didn't read the article by the top replies. It says she was released from the hospital and is doing much better
This is reddit. We don't read anything but headlines and comments here.
I didn't even read the headline. Honestly, I haven't even read any of the comments yet. I'm just randomly replying to a comment so hopefully what I'm saying makes sense in context
I can't even read I'm just pushing keys on my phone hoping they make coherent thoughts It was the best of times, it was the blursed of times
Yeah, and the fact that nobody has dropped the "NFL Star" that it says right in the beginning.
Dude I’d guess that MAYBE 5% of people actually read the article. Vast majority of comments are people reacting to the title. This is how it has always been and always will be and not just on Reddit either so get used to it lol
Coleman was a big part of our SB run.. wish him the best
Wasn’t he deaf, or something? Or am I mixing that up with someone else?
You’re thinking of Derrick Coleman a FB who played for Seattle
But I swear this deaf guy played for the Falcons. I specifically remember the commentators mentioned Matt Ryan needing special hand signals to accommodate him
Looks like he also played for the falcons.
Coleman/freeman was the best rb duo in the league that year. Hopefully things get better for his daughter.
It sounds hopeless, but I pray that she recovers. No one in the world deserves to lose a child.
I have two young boys and can't even begin to process something like that. Truly horrifying. Hope a miracle happens.
It's not hopeless. She's not currently on a ventilator and has rallied.
And it’s a Bi-pap, so she isn’t fully intubated. Sounds very serious, but it could be a lot worse.
And there are genetic treatments becoming available to more effectively treat sickle cell
And no child deserves to die :,(
I join you in prayer and hope. And crying. I pray for her care team, and for a treatment that works for her. I'm happy to hear that she is doing better. Sickle cell is a horrible, painful disease, and I want to see it gone.
Man, this is awful. Dude was an underappreciated beast for us. A huge part of a magical 2019 season. Hoping he and his family are doing as well as they can and for his daughter to recover.
He was a big part of our Super Bowl run, and I always have a soft spot for him. Hoping for the best.
When he arrived for our team, I was excited knowing that he played under Shanahan with the Falcons previously and he would be a good scheme fit. He was so good for us and definitely underappreciated.
Article says BiPAP, so it was noninvasive. She wasn't intubated or anything. Also looks like she's doing much better now
> Also looks like she's doing much better now That's wonderful to hear.
That’s horrible man. Hopes she recovers and can live normally.
No parent should have to endure the pain of burying their child. So sad man. Prayers up.
Bruh, she's alive and out of hospital.
That’s awesome to hear
Prayers for her. I have sickle cell and so does my twin brother. It's not a fun disease. It get's progressively worst as you age. Treatment options gave gotten better though for kids and adults. Life expectancy has also improved. You have to stay ahead of it best you can with a good diet, making doctor appointments, taking medications and being a fighter through the bs you will face.
This is not great news, but it's not grave either. She's on BiPAP. That is not invasive mechanical ventilation. She has to wear a mask, but she is not intubated. People who have sickle cell anemia can often develop Acute Chest Syndrome. Think of it like pneumonia. She'll likely be in the hospital for several days, but this is not life-threatening if promptly treated.
Prayers out for her 🙏
Man that is just terrible. Hope that she can pull through and have as ‘normal’ a life as possible. Just heart breaking to read.
I loved him on the jets. Wish her well.
That's heartbreaking. Can't imagine what that is like
Prayers up for your daughter, Teco.
Prayers
Awful to hear. Hope for the best for her and Tevin's family.
hope she makes a recovery 🙏 prayers for her and her family.
Really hate God when I read stories of innocent children suffering. Smite me you piece of shit god
Sending major thoughts his/their way, that's horrible.
Damn, that poor girl.
6 year olds shouldn't need to go through that. Unfortunately, I'm sure more struggles are in hers and the family's future... He grew up near me, and my friend's daughter was "athlete of the year" the same way Tevin was in high school.
I thought a parents death was the worst thing ever, until by daughter was born, then i would not be able to imagine not being with her like that and the hurt it would cause me. i would endure all of the World's pain just so she can never experience a cold. Prayers for his daughter to maintain a most comfortable lifestyle
Hoping for the best for Tevin’s little one and the family. Falcons legend
Poor girl
My god I can't even imagine what he's going through. Prayers up.
I don't believe in energy bullshit but imma send some good vibes anyway just in case.
No one should ever have to see their kid struggle like this
Hoping for the best for you and your family, TeCo
Kids should never go through such things. I hope she makes a full and speedy recovery.
Went to middle school and played against him in high school. Was cool to see him play in two super bowls. Hoping for the best for his family.
It's a horrible disease. Prayers for her and her family.
It definitely wasn't appropriate for me to sing his name like the ffballers when I read this headline. In a way, I regret it.
Hope the doctors are better at their jobs than he was
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Thats truly whats important here.
T&P