VX770

[jessykt]

I got excited, then let down, told I didn't have the G551D. Had my nurse double check and then she said I did. I am excited but afraid that there is another mistake and that I don't actually have it, so I am sort of in limbo.
<br />
<br />It is truly hard to NOT have bad feelings that you don't have the gene they are addressing, so don't feel bad about that. You are entitled to those feelings! You can be happy for others while grieving for yourself, too.
<br />
<br />But any progress they make with one mutation/drug will provide more information for others. It's terribly difficult to think of having to wait, but we are much closer than when I was diagnosed and my parents were told I wouldn't live to be a teenager. Yet, here I am and it's all because things ARE progressing and seem to be moving at a faster rate.
<br />
<br />In the meantime, don't beat yourself up because you are disappointed or jealous. You are a human and you have cf, and you are tapped into your "self-preservation," that's all.

 

[InhalingHope]

I think what you are feeling is 100% normal. I am a DDF508 and I know I am jealous as well. I really don't even like reading the articles about the drug. I think it is hard to know others with your SAME disease are able to receive a drug that will hugely impact their lives while yours will remain the same. I am happyfor others, but so wish I could benefit too. I also feel bad because they are now working of one for my mutation, but I think of all the CFers that don't have either mutation. I am sure they are jealous as well. I think this is a great step for the CF community and I hope that they can work to help ALL CF mutations. You are human and I think it is only human to feel jealous when an amazing drug is discovered for your disease, but won't directly help you.

 

[InhalingHope]

I think what you are feeling is 100% normal. I am a DDF508 and I know I am jealous as well. I really don't even like reading the articles about the drug. I think it is hard to know others with your SAME disease are able to receive a drug that will hugely impact their lives while yours will remain the same. I am happyfor others, but so wish I could benefit too. I also feel bad because they are now working of one for my mutation, but I think of all the CFers that don't have either mutation. I am sure they are jealous as well. I think this is a great step for the CF community and I hope that they can work to help ALL CF mutations. You are human and I think it is only human to feel jealous when an amazing drug is discovered for your disease, but won't directly help you.

 

[InhalingHope]

I think what you are feeling is 100% normal. I am a DDF508 and I know I am jealous as well. I really don't even like reading the articles about the drug. I think it is hard to know others with your SAME disease are able to receive a drug that will hugely impact their lives while yours will remain the same. I am happyfor others, but so wish I could benefit too. I also feel bad because they are now working of one for my mutation, but I think of all the CFers that don't have either mutation. I am sure they are jealous as well. I think this is a great step for the CF community and I hope that they can work to help ALL CF mutations. You are human and I think it is only human to feel jealous when an amazing drug is discovered for your disease, but won't directly help you.

 

[chrissyd]

I agree with just about everyone else. I was/am a little disappointed too. BUT, I am super excited about this new drug because it is a step in the right direction and it gives me hope for the future.

 

[chrissyd]

I agree with just about everyone else. I was/am a little disappointed too. BUT, I am super excited about this new drug because it is a step in the right direction and it gives me hope for the future.

 

[chrissyd]

I agree with just about everyone else. I was/am a little disappointed too. BUT, I am super excited about this new drug because it is a step in the right direction and it gives me hope for the future.

 

[dasjsmum]

I dont blame any of you for feeling the way you do. I would feel the same if my kids didnt have the g551d. I really believe the 770/809/661 combo will work for df508 though.....and even with the good news, us getting the 770 might be a couple of years or more away, and we here in Australia have to get it on our health listing so we can afford it. I hope that doesnt take too long because I cant afford tens of thousands of dollars a year :/

 

[dasjsmum]

I dont blame any of you for feeling the way you do. I would feel the same if my kids didnt have the g551d. I really believe the 770/809/661 combo will work for df508 though.....and even with the good news, us getting the 770 might be a couple of years or more away, and we here in Australia have to get it on our health listing so we can afford it. I hope that doesnt take too long because I cant afford tens of thousands of dollars a year :/

 

[dasjsmum]

I dont blame any of you for feeling the way you do. I would feel the same if my kids didnt have the g551d. I really believe the 770/809/661 combo will work for df508 though.....and even with the good news, us getting the 770 might be a couple of years or more away, and we here in Australia have to get it on our health listing so we can afford it. I hope that doesnt take too long because I cant afford tens of thousands of dollars a year :/

 

[azdesertrat]

I don't even know what mutation(s) I have.
Does anyone know if will this have any impact on transplant patients with CF?

 

[azdesertrat]

I don't even know what mutation(s) I have.
Does anyone know if will this have any impact on transplant patients with CF?

 

[azdesertrat]

I don't even know what mutation(s) I have.
<br />Does anyone know if will this have any impact on transplant patients with CF?

 

[azdesertrat]

I forgot to add how happy we are for the people this drug will help!
It is so exciting to know that FINALLY there is another drug that will help some of us.
Congratulations to those of you that will soon be on this.
I'd love to hear how much better y'all are doing!

 

[azdesertrat]

I forgot to add how happy we are for the people this drug will help!
It is so exciting to know that FINALLY there is another drug that will help some of us.
Congratulations to those of you that will soon be on this.
I'd love to hear how much better y'all are doing!

 

[azdesertrat]

I forgot to add how happy we are for the people this drug will help!
<br />It is so exciting to know that FINALLY there is another drug that will help some of us.
<br />Congratulations to those of you that will soon be on this.
<br />I'd love to hear how much better y'all are doing!

 

[beleache]

Hey Jen,  <div><br></div><div>It is normal to feel a little let down that it isn't your own mutation , but I am still overjoyed that SOMETHING is going in a very good direction !  Hopefully it will continue & target all mutations in the very near future !  Please God hear my prayer..   In the meantime, I am happy for those that are being helped by it.. </div><div><br></div><div> <3  joni</div>

 

[beleache]

Hey Jen, <br>It is normal to feel a little let down that it isn't your own mutation , but I am still overjoyed that SOMETHING is going in a very good direction ! Hopefully it will continue & target all mutations in the very near future ! Please God hear my prayer.. In the meantime, I am happy for those that are being helped by it..<br><3 joni

 

[beleache]

Hey Jen, <br>It is normal to feel a little let down that it isn't your own mutation , but I am still overjoyed that SOMETHING is going in a very good direction ! Hopefully it will continue & target all mutations in the very near future ! Please God hear my prayer.. In the meantime, I am happy for those that are being helped by it..<br><3 joni