Are you hopeful?

M

MargaritaChic

New member
Are you hopeful that there will be a cure (or a treatment that manages CF) within your child's lifetime?

I think in the next 5 years huge strides will be made in managing/curing CF. Drugs like PTC124 and VX-770 make me very hopeful for my little girl.

I am just wondering how others feel.
 
M

MargaritaChic

New member
Are you hopeful that there will be a cure (or a treatment that manages CF) within your child's lifetime?

I think in the next 5 years huge strides will be made in managing/curing CF. Drugs like PTC124 and VX-770 make me very hopeful for my little girl.

I am just wondering how others feel.
 
M

MargaritaChic

New member
Are you hopeful that there will be a cure (or a treatment that manages CF) within your child's lifetime?

I think in the next 5 years huge strides will be made in managing/curing CF. Drugs like PTC124 and VX-770 make me very hopeful for my little girl.

I am just wondering how others feel.
 
M

MargaritaChic

New member
Are you hopeful that there will be a cure (or a treatment that manages CF) within your child's lifetime?

I think in the next 5 years huge strides will be made in managing/curing CF. Drugs like PTC124 and VX-770 make me very hopeful for my little girl.

I am just wondering how others feel.
 
M

MargaritaChic

New member
Are you hopeful that there will be a cure (or a treatment that manages CF) within your child's lifetime?
<br />
<br />I think in the next 5 years huge strides will be made in managing/curing CF. Drugs like PTC124 and VX-770 make me very hopeful for my little girl.
<br />
<br />I am just wondering how others feel.
 
J

JORDYSMOM

New member
I think that one must always have hope.

These two drugs do sound very promising. Most drugs coming down the pipeline have been created to treat specific mutations, and it looks like your daughter has mutations that these drugs could have an impact on. That is awesome!

The thing about CF, is that it is so complex. There are over 1500 gene mutations that can present very differently. I don't think we can say there will be a cure, but I do believe that a lot of patients will see an even greater improvement in their quality of life than what we have already been able to accomplish.

Stacey
 
J

JORDYSMOM

New member
I think that one must always have hope.

These two drugs do sound very promising. Most drugs coming down the pipeline have been created to treat specific mutations, and it looks like your daughter has mutations that these drugs could have an impact on. That is awesome!

The thing about CF, is that it is so complex. There are over 1500 gene mutations that can present very differently. I don't think we can say there will be a cure, but I do believe that a lot of patients will see an even greater improvement in their quality of life than what we have already been able to accomplish.

Stacey
 
J

JORDYSMOM

New member
I think that one must always have hope.

These two drugs do sound very promising. Most drugs coming down the pipeline have been created to treat specific mutations, and it looks like your daughter has mutations that these drugs could have an impact on. That is awesome!

The thing about CF, is that it is so complex. There are over 1500 gene mutations that can present very differently. I don't think we can say there will be a cure, but I do believe that a lot of patients will see an even greater improvement in their quality of life than what we have already been able to accomplish.

Stacey
 
J

JORDYSMOM

New member
I think that one must always have hope.

These two drugs do sound very promising. Most drugs coming down the pipeline have been created to treat specific mutations, and it looks like your daughter has mutations that these drugs could have an impact on. That is awesome!

The thing about CF, is that it is so complex. There are over 1500 gene mutations that can present very differently. I don't think we can say there will be a cure, but I do believe that a lot of patients will see an even greater improvement in their quality of life than what we have already been able to accomplish.

Stacey
 
J

JORDYSMOM

New member
I think that one must always have hope.
<br />
<br />These two drugs do sound very promising. Most drugs coming down the pipeline have been created to treat specific mutations, and it looks like your daughter has mutations that these drugs could have an impact on. That is awesome!
<br />
<br />The thing about CF, is that it is so complex. There are over 1500 gene mutations that can present very differently. I don't think we can say there will be a cure, but I do believe that a lot of patients will see an even greater improvement in their quality of life than what we have already been able to accomplish.
<br />
<br />Stacey
<br />
 
M

Mommafirst

Guest
I want to be hopeful. I do believe that drugs like those two have great potential, but there are two main things I get hung up on.

1. Even if these drugs are fabulous, no doctor worth much of anything is going to suggest a patient STOP preventative CF treatments on the hope that this drug will continue to be a long term fix. So even if it works, our CFers will still have a life (long I hope) filled with excessive appts. and hours of treatments. Maybe once they have 50 years of data they will be able to consider it a 'cure' but to be on the front end of it would seem difficult to believe that we can just throw away everything we are doing preventatively.

2. Considering the cost of drugs that are for a larger population than these mutation specific ones, the user cost is going to be very high for these. What if insurance decides not to cover it? Or if I can get it covered now but when my insurance changes or my daughter gets her own insurance she has to go without it?

So am I hopeful? Yes. Do I think that our kids will have a much better chance of living a longer, healthier life than kids diagnosed 40 years ago? Yes. But do I think CF is ever going away for them, do I think its really a 'cure'? No, I do not.
 
M

Mommafirst

Guest
I want to be hopeful. I do believe that drugs like those two have great potential, but there are two main things I get hung up on.

1. Even if these drugs are fabulous, no doctor worth much of anything is going to suggest a patient STOP preventative CF treatments on the hope that this drug will continue to be a long term fix. So even if it works, our CFers will still have a life (long I hope) filled with excessive appts. and hours of treatments. Maybe once they have 50 years of data they will be able to consider it a 'cure' but to be on the front end of it would seem difficult to believe that we can just throw away everything we are doing preventatively.

2. Considering the cost of drugs that are for a larger population than these mutation specific ones, the user cost is going to be very high for these. What if insurance decides not to cover it? Or if I can get it covered now but when my insurance changes or my daughter gets her own insurance she has to go without it?

So am I hopeful? Yes. Do I think that our kids will have a much better chance of living a longer, healthier life than kids diagnosed 40 years ago? Yes. But do I think CF is ever going away for them, do I think its really a 'cure'? No, I do not.
 
M

Mommafirst

Guest
I want to be hopeful. I do believe that drugs like those two have great potential, but there are two main things I get hung up on.

1. Even if these drugs are fabulous, no doctor worth much of anything is going to suggest a patient STOP preventative CF treatments on the hope that this drug will continue to be a long term fix. So even if it works, our CFers will still have a life (long I hope) filled with excessive appts. and hours of treatments. Maybe once they have 50 years of data they will be able to consider it a 'cure' but to be on the front end of it would seem difficult to believe that we can just throw away everything we are doing preventatively.

2. Considering the cost of drugs that are for a larger population than these mutation specific ones, the user cost is going to be very high for these. What if insurance decides not to cover it? Or if I can get it covered now but when my insurance changes or my daughter gets her own insurance she has to go without it?

So am I hopeful? Yes. Do I think that our kids will have a much better chance of living a longer, healthier life than kids diagnosed 40 years ago? Yes. But do I think CF is ever going away for them, do I think its really a 'cure'? No, I do not.
 
M

Mommafirst

Guest
I want to be hopeful. I do believe that drugs like those two have great potential, but there are two main things I get hung up on.

1. Even if these drugs are fabulous, no doctor worth much of anything is going to suggest a patient STOP preventative CF treatments on the hope that this drug will continue to be a long term fix. So even if it works, our CFers will still have a life (long I hope) filled with excessive appts. and hours of treatments. Maybe once they have 50 years of data they will be able to consider it a 'cure' but to be on the front end of it would seem difficult to believe that we can just throw away everything we are doing preventatively.

2. Considering the cost of drugs that are for a larger population than these mutation specific ones, the user cost is going to be very high for these. What if insurance decides not to cover it? Or if I can get it covered now but when my insurance changes or my daughter gets her own insurance she has to go without it?

So am I hopeful? Yes. Do I think that our kids will have a much better chance of living a longer, healthier life than kids diagnosed 40 years ago? Yes. But do I think CF is ever going away for them, do I think its really a 'cure'? No, I do not.
 
M

Mommafirst

Guest
I want to be hopeful. I do believe that drugs like those two have great potential, but there are two main things I get hung up on.
<br />
<br />1. Even if these drugs are fabulous, no doctor worth much of anything is going to suggest a patient STOP preventative CF treatments on the hope that this drug will continue to be a long term fix. So even if it works, our CFers will still have a life (long I hope) filled with excessive appts. and hours of treatments. Maybe once they have 50 years of data they will be able to consider it a 'cure' but to be on the front end of it would seem difficult to believe that we can just throw away everything we are doing preventatively.
<br />
<br />2. Considering the cost of drugs that are for a larger population than these mutation specific ones, the user cost is going to be very high for these. What if insurance decides not to cover it? Or if I can get it covered now but when my insurance changes or my daughter gets her own insurance she has to go without it?
<br />
<br />So am I hopeful? Yes. Do I think that our kids will have a much better chance of living a longer, healthier life than kids diagnosed 40 years ago? Yes. But do I think CF is ever going away for them, do I think its really a 'cure'? No, I do not.
 
I

izemmom

New member
As usual, I'm going to say "ditto" to Heather.

I am hopeful that Emily will grow to be a successful woman.
I am hopeful that she will do whatever she wants in her life.
I am hopeful that I will hold her children.
I am hopeful that she will see her children grow.
I am hopeful that her CF will be a part of her life that she controls, not one that controls her.
I am hopeful that she and I just get through her teenage years together without hating each other. (Some days, this looks like the least likely on the list...and she's only 2!!!!!)

Am I hopeful for a cure. Realistically, no. I'm not convinced there will ever be one. Not in Emily's lifetime. But, I do, with my whole heart, beleive that the work that the CFF and the pharmacuetical companies are doing now IS going to make my hopes and Emily's hopes become realiaties.

I don't think it will be an easy road. But I beleive (HOPE!) it wlll be a long one.
 
I

izemmom

New member
As usual, I'm going to say "ditto" to Heather.

I am hopeful that Emily will grow to be a successful woman.
I am hopeful that she will do whatever she wants in her life.
I am hopeful that I will hold her children.
I am hopeful that she will see her children grow.
I am hopeful that her CF will be a part of her life that she controls, not one that controls her.
I am hopeful that she and I just get through her teenage years together without hating each other. (Some days, this looks like the least likely on the list...and she's only 2!!!!!)

Am I hopeful for a cure. Realistically, no. I'm not convinced there will ever be one. Not in Emily's lifetime. But, I do, with my whole heart, beleive that the work that the CFF and the pharmacuetical companies are doing now IS going to make my hopes and Emily's hopes become realiaties.

I don't think it will be an easy road. But I beleive (HOPE!) it wlll be a long one.
 
I

izemmom

New member
As usual, I'm going to say "ditto" to Heather.

I am hopeful that Emily will grow to be a successful woman.
I am hopeful that she will do whatever she wants in her life.
I am hopeful that I will hold her children.
I am hopeful that she will see her children grow.
I am hopeful that her CF will be a part of her life that she controls, not one that controls her.
I am hopeful that she and I just get through her teenage years together without hating each other. (Some days, this looks like the least likely on the list...and she's only 2!!!!!)

Am I hopeful for a cure. Realistically, no. I'm not convinced there will ever be one. Not in Emily's lifetime. But, I do, with my whole heart, beleive that the work that the CFF and the pharmacuetical companies are doing now IS going to make my hopes and Emily's hopes become realiaties.

I don't think it will be an easy road. But I beleive (HOPE!) it wlll be a long one.
 
I

izemmom

New member
As usual, I'm going to say "ditto" to Heather.

I am hopeful that Emily will grow to be a successful woman.
I am hopeful that she will do whatever she wants in her life.
I am hopeful that I will hold her children.
I am hopeful that she will see her children grow.
I am hopeful that her CF will be a part of her life that she controls, not one that controls her.
I am hopeful that she and I just get through her teenage years together without hating each other. (Some days, this looks like the least likely on the list...and she's only 2!!!!!)

Am I hopeful for a cure. Realistically, no. I'm not convinced there will ever be one. Not in Emily's lifetime. But, I do, with my whole heart, beleive that the work that the CFF and the pharmacuetical companies are doing now IS going to make my hopes and Emily's hopes become realiaties.

I don't think it will be an easy road. But I beleive (HOPE!) it wlll be a long one.
 
I

izemmom

New member
As usual, I'm going to say "ditto" to Heather.
<br />
<br />I am hopeful that Emily will grow to be a successful woman.
<br />I am hopeful that she will do whatever she wants in her life.
<br />I am hopeful that I will hold her children.
<br />I am hopeful that she will see her children grow.
<br />I am hopeful that her CF will be a part of her life that she controls, not one that controls her.
<br />I am hopeful that she and I just get through her teenage years together without hating each other. (Some days, this looks like the least likely on the list...and she's only 2!!!!!)
<br />
<br />Am I hopeful for a cure. Realistically, no. I'm not convinced there will ever be one. Not in Emily's lifetime. But, I do, with my whole heart, beleive that the work that the CFF and the pharmacuetical companies are doing now IS going to make my hopes and Emily's hopes become realiaties.
<br />
<br />I don't think it will be an easy road. But I beleive (HOPE!) it wlll be a long one.
 
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