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Found something cool
- Thread starter Faust
- Start date
Good PFTs! Lets hear it for burdening society in old age! - A worthy goal.
One of my mutations is also G551D - My understanding is that G551D is a "class 3" mutation, where the CFTR protien is present, the protien channel is present, but there are "gating" issues caused by the mutation that keep ion transfer from occurring normally.
This is good - it means that the CFTR protien is there, the CFTR channel is there, and seems to have some small level of function, resulting in
1) higher likelihood of more "mild" CF, and
2) great opportunities for mutation specific treatment - it is easier to try to keep a channel "gate" open than it is to correct the production of the CFTR protien or channel itself.
One example of this specific treatment for G551D is already moving through the CF pipeline -
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/ClinicalResearchPDF/CR31.pdf">http://www.cff.org/UploadedFil...alResearchPDF/CR31.pdf</a>
I have been having sinus surgery since I was 4 years old - nasal polyps, deviated septum, inflamed turbinates, etc. Its never fun, but they have gotten so much better at it over the years. In August 2007 I underwent my most recent surgery - amazing.
1) Somehow (I'm not sure how...) they didn't have to intubate me, which made me feel tons better about the whole thing.
2) They did a CT scan of my head, wearing a "mask" that allowed them to map my sinueses digitally. I then wore the mask during surgery, and they did the whole thing using a computer controlled robot. Now that's cool.
3) They have also developed disolvable packing, which is way better than it used to be.
Obviously, anathesia is always scary, but physically it sounds like you're in great shape, and as long as your dr. is competent, you'll be fine. You will feel SO much better when its over. You don't even realize how crappy you have been feeling because of your sinuses.
Good luck,
Chris
27 m w/CF
One of my mutations is also G551D - My understanding is that G551D is a "class 3" mutation, where the CFTR protien is present, the protien channel is present, but there are "gating" issues caused by the mutation that keep ion transfer from occurring normally.
This is good - it means that the CFTR protien is there, the CFTR channel is there, and seems to have some small level of function, resulting in
1) higher likelihood of more "mild" CF, and
2) great opportunities for mutation specific treatment - it is easier to try to keep a channel "gate" open than it is to correct the production of the CFTR protien or channel itself.
One example of this specific treatment for G551D is already moving through the CF pipeline -
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/ClinicalResearchPDF/CR31.pdf">http://www.cff.org/UploadedFil...alResearchPDF/CR31.pdf</a>
I have been having sinus surgery since I was 4 years old - nasal polyps, deviated septum, inflamed turbinates, etc. Its never fun, but they have gotten so much better at it over the years. In August 2007 I underwent my most recent surgery - amazing.
1) Somehow (I'm not sure how...) they didn't have to intubate me, which made me feel tons better about the whole thing.
2) They did a CT scan of my head, wearing a "mask" that allowed them to map my sinueses digitally. I then wore the mask during surgery, and they did the whole thing using a computer controlled robot. Now that's cool.
3) They have also developed disolvable packing, which is way better than it used to be.
Obviously, anathesia is always scary, but physically it sounds like you're in great shape, and as long as your dr. is competent, you'll be fine. You will feel SO much better when its over. You don't even realize how crappy you have been feeling because of your sinuses.
Good luck,
Chris
27 m w/CF
Good PFTs! Lets hear it for burdening society in old age! - A worthy goal.
One of my mutations is also G551D - My understanding is that G551D is a "class 3" mutation, where the CFTR protien is present, the protien channel is present, but there are "gating" issues caused by the mutation that keep ion transfer from occurring normally.
This is good - it means that the CFTR protien is there, the CFTR channel is there, and seems to have some small level of function, resulting in
1) higher likelihood of more "mild" CF, and
2) great opportunities for mutation specific treatment - it is easier to try to keep a channel "gate" open than it is to correct the production of the CFTR protien or channel itself.
One example of this specific treatment for G551D is already moving through the CF pipeline -
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/ClinicalResearchPDF/CR31.pdf">http://www.cff.org/UploadedFil...alResearchPDF/CR31.pdf</a>
I have been having sinus surgery since I was 4 years old - nasal polyps, deviated septum, inflamed turbinates, etc. Its never fun, but they have gotten so much better at it over the years. In August 2007 I underwent my most recent surgery - amazing.
1) Somehow (I'm not sure how...) they didn't have to intubate me, which made me feel tons better about the whole thing.
2) They did a CT scan of my head, wearing a "mask" that allowed them to map my sinueses digitally. I then wore the mask during surgery, and they did the whole thing using a computer controlled robot. Now that's cool.
3) They have also developed disolvable packing, which is way better than it used to be.
Obviously, anathesia is always scary, but physically it sounds like you're in great shape, and as long as your dr. is competent, you'll be fine. You will feel SO much better when its over. You don't even realize how crappy you have been feeling because of your sinuses.
Good luck,
Chris
27 m w/CF
One of my mutations is also G551D - My understanding is that G551D is a "class 3" mutation, where the CFTR protien is present, the protien channel is present, but there are "gating" issues caused by the mutation that keep ion transfer from occurring normally.
This is good - it means that the CFTR protien is there, the CFTR channel is there, and seems to have some small level of function, resulting in
1) higher likelihood of more "mild" CF, and
2) great opportunities for mutation specific treatment - it is easier to try to keep a channel "gate" open than it is to correct the production of the CFTR protien or channel itself.
One example of this specific treatment for G551D is already moving through the CF pipeline -
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/ClinicalResearchPDF/CR31.pdf">http://www.cff.org/UploadedFil...alResearchPDF/CR31.pdf</a>
I have been having sinus surgery since I was 4 years old - nasal polyps, deviated septum, inflamed turbinates, etc. Its never fun, but they have gotten so much better at it over the years. In August 2007 I underwent my most recent surgery - amazing.
1) Somehow (I'm not sure how...) they didn't have to intubate me, which made me feel tons better about the whole thing.
2) They did a CT scan of my head, wearing a "mask" that allowed them to map my sinueses digitally. I then wore the mask during surgery, and they did the whole thing using a computer controlled robot. Now that's cool.
3) They have also developed disolvable packing, which is way better than it used to be.
Obviously, anathesia is always scary, but physically it sounds like you're in great shape, and as long as your dr. is competent, you'll be fine. You will feel SO much better when its over. You don't even realize how crappy you have been feeling because of your sinuses.
Good luck,
Chris
27 m w/CF
Good PFTs! Lets hear it for burdening society in old age! - A worthy goal.
One of my mutations is also G551D - My understanding is that G551D is a "class 3" mutation, where the CFTR protien is present, the protien channel is present, but there are "gating" issues caused by the mutation that keep ion transfer from occurring normally.
This is good - it means that the CFTR protien is there, the CFTR channel is there, and seems to have some small level of function, resulting in
1) higher likelihood of more "mild" CF, and
2) great opportunities for mutation specific treatment - it is easier to try to keep a channel "gate" open than it is to correct the production of the CFTR protien or channel itself.
One example of this specific treatment for G551D is already moving through the CF pipeline -
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/ClinicalResearchPDF/CR31.pdf">http://www.cff.org/UploadedFil...alResearchPDF/CR31.pdf</a>
I have been having sinus surgery since I was 4 years old - nasal polyps, deviated septum, inflamed turbinates, etc. Its never fun, but they have gotten so much better at it over the years. In August 2007 I underwent my most recent surgery - amazing.
1) Somehow (I'm not sure how...) they didn't have to intubate me, which made me feel tons better about the whole thing.
2) They did a CT scan of my head, wearing a "mask" that allowed them to map my sinueses digitally. I then wore the mask during surgery, and they did the whole thing using a computer controlled robot. Now that's cool.
3) They have also developed disolvable packing, which is way better than it used to be.
Obviously, anathesia is always scary, but physically it sounds like you're in great shape, and as long as your dr. is competent, you'll be fine. You will feel SO much better when its over. You don't even realize how crappy you have been feeling because of your sinuses.
Good luck,
Chris
27 m w/CF
One of my mutations is also G551D - My understanding is that G551D is a "class 3" mutation, where the CFTR protien is present, the protien channel is present, but there are "gating" issues caused by the mutation that keep ion transfer from occurring normally.
This is good - it means that the CFTR protien is there, the CFTR channel is there, and seems to have some small level of function, resulting in
1) higher likelihood of more "mild" CF, and
2) great opportunities for mutation specific treatment - it is easier to try to keep a channel "gate" open than it is to correct the production of the CFTR protien or channel itself.
One example of this specific treatment for G551D is already moving through the CF pipeline -
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/ClinicalResearchPDF/CR31.pdf">http://www.cff.org/UploadedFil...alResearchPDF/CR31.pdf</a>
I have been having sinus surgery since I was 4 years old - nasal polyps, deviated septum, inflamed turbinates, etc. Its never fun, but they have gotten so much better at it over the years. In August 2007 I underwent my most recent surgery - amazing.
1) Somehow (I'm not sure how...) they didn't have to intubate me, which made me feel tons better about the whole thing.
2) They did a CT scan of my head, wearing a "mask" that allowed them to map my sinueses digitally. I then wore the mask during surgery, and they did the whole thing using a computer controlled robot. Now that's cool.
3) They have also developed disolvable packing, which is way better than it used to be.
Obviously, anathesia is always scary, but physically it sounds like you're in great shape, and as long as your dr. is competent, you'll be fine. You will feel SO much better when its over. You don't even realize how crappy you have been feeling because of your sinuses.
Good luck,
Chris
27 m w/CF
Good PFTs! Lets hear it for burdening society in old age! - A worthy goal.
One of my mutations is also G551D - My understanding is that G551D is a "class 3" mutation, where the CFTR protien is present, the protien channel is present, but there are "gating" issues caused by the mutation that keep ion transfer from occurring normally.
This is good - it means that the CFTR protien is there, the CFTR channel is there, and seems to have some small level of function, resulting in
1) higher likelihood of more "mild" CF, and
2) great opportunities for mutation specific treatment - it is easier to try to keep a channel "gate" open than it is to correct the production of the CFTR protien or channel itself.
One example of this specific treatment for G551D is already moving through the CF pipeline -
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/ClinicalResearchPDF/CR31.pdf">http://www.cff.org/UploadedFil...alResearchPDF/CR31.pdf</a>
I have been having sinus surgery since I was 4 years old - nasal polyps, deviated septum, inflamed turbinates, etc. Its never fun, but they have gotten so much better at it over the years. In August 2007 I underwent my most recent surgery - amazing.
1) Somehow (I'm not sure how...) they didn't have to intubate me, which made me feel tons better about the whole thing.
2) They did a CT scan of my head, wearing a "mask" that allowed them to map my sinueses digitally. I then wore the mask during surgery, and they did the whole thing using a computer controlled robot. Now that's cool.
3) They have also developed disolvable packing, which is way better than it used to be.
Obviously, anathesia is always scary, but physically it sounds like you're in great shape, and as long as your dr. is competent, you'll be fine. You will feel SO much better when its over. You don't even realize how crappy you have been feeling because of your sinuses.
Good luck,
Chris
27 m w/CF
One of my mutations is also G551D - My understanding is that G551D is a "class 3" mutation, where the CFTR protien is present, the protien channel is present, but there are "gating" issues caused by the mutation that keep ion transfer from occurring normally.
This is good - it means that the CFTR protien is there, the CFTR channel is there, and seems to have some small level of function, resulting in
1) higher likelihood of more "mild" CF, and
2) great opportunities for mutation specific treatment - it is easier to try to keep a channel "gate" open than it is to correct the production of the CFTR protien or channel itself.
One example of this specific treatment for G551D is already moving through the CF pipeline -
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/ClinicalResearchPDF/CR31.pdf">http://www.cff.org/UploadedFil...alResearchPDF/CR31.pdf</a>
I have been having sinus surgery since I was 4 years old - nasal polyps, deviated septum, inflamed turbinates, etc. Its never fun, but they have gotten so much better at it over the years. In August 2007 I underwent my most recent surgery - amazing.
1) Somehow (I'm not sure how...) they didn't have to intubate me, which made me feel tons better about the whole thing.
2) They did a CT scan of my head, wearing a "mask" that allowed them to map my sinueses digitally. I then wore the mask during surgery, and they did the whole thing using a computer controlled robot. Now that's cool.
3) They have also developed disolvable packing, which is way better than it used to be.
Obviously, anathesia is always scary, but physically it sounds like you're in great shape, and as long as your dr. is competent, you'll be fine. You will feel SO much better when its over. You don't even realize how crappy you have been feeling because of your sinuses.
Good luck,
Chris
27 m w/CF
Good PFTs! Lets hear it for burdening society in old age! - A worthy goal.
<br />
<br />One of my mutations is also G551D - My understanding is that G551D is a "class 3" mutation, where the CFTR protien is present, the protien channel is present, but there are "gating" issues caused by the mutation that keep ion transfer from occurring normally.
<br />
<br />This is good - it means that the CFTR protien is there, the CFTR channel is there, and seems to have some small level of function, resulting in
<br />
<br />1) higher likelihood of more "mild" CF, and
<br />
<br />2) great opportunities for mutation specific treatment - it is easier to try to keep a channel "gate" open than it is to correct the production of the CFTR protien or channel itself.
<br />
<br />One example of this specific treatment for G551D is already moving through the CF pipeline -
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/ClinicalResearchPDF/CR31.pdf">http://www.cff.org/UploadedFil...alResearchPDF/CR31.pdf</a>
<br />
<br />
<br />I have been having sinus surgery since I was 4 years old - nasal polyps, deviated septum, inflamed turbinates, etc. Its never fun, but they have gotten so much better at it over the years. In August 2007 I underwent my most recent surgery - amazing.
<br />
<br />1) Somehow (I'm not sure how...) they didn't have to intubate me, which made me feel tons better about the whole thing.
<br />
<br />2) They did a CT scan of my head, wearing a "mask" that allowed them to map my sinueses digitally. I then wore the mask during surgery, and they did the whole thing using a computer controlled robot. Now that's cool.
<br />
<br />3) They have also developed disolvable packing, which is way better than it used to be.
<br />
<br />Obviously, anathesia is always scary, but physically it sounds like you're in great shape, and as long as your dr. is competent, you'll be fine. You will feel SO much better when its over. You don't even realize how crappy you have been feeling because of your sinuses.
<br />
<br />Good luck,
<br />
<br />Chris
<br />
<br />27 m w/CF
<br />
<br />
<br />
<br />
<br />One of my mutations is also G551D - My understanding is that G551D is a "class 3" mutation, where the CFTR protien is present, the protien channel is present, but there are "gating" issues caused by the mutation that keep ion transfer from occurring normally.
<br />
<br />This is good - it means that the CFTR protien is there, the CFTR channel is there, and seems to have some small level of function, resulting in
<br />
<br />1) higher likelihood of more "mild" CF, and
<br />
<br />2) great opportunities for mutation specific treatment - it is easier to try to keep a channel "gate" open than it is to correct the production of the CFTR protien or channel itself.
<br />
<br />One example of this specific treatment for G551D is already moving through the CF pipeline -
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/ClinicalResearchPDF/CR31.pdf">http://www.cff.org/UploadedFil...alResearchPDF/CR31.pdf</a>
<br />
<br />
<br />I have been having sinus surgery since I was 4 years old - nasal polyps, deviated septum, inflamed turbinates, etc. Its never fun, but they have gotten so much better at it over the years. In August 2007 I underwent my most recent surgery - amazing.
<br />
<br />1) Somehow (I'm not sure how...) they didn't have to intubate me, which made me feel tons better about the whole thing.
<br />
<br />2) They did a CT scan of my head, wearing a "mask" that allowed them to map my sinueses digitally. I then wore the mask during surgery, and they did the whole thing using a computer controlled robot. Now that's cool.
<br />
<br />3) They have also developed disolvable packing, which is way better than it used to be.
<br />
<br />Obviously, anathesia is always scary, but physically it sounds like you're in great shape, and as long as your dr. is competent, you'll be fine. You will feel SO much better when its over. You don't even realize how crappy you have been feeling because of your sinuses.
<br />
<br />Good luck,
<br />
<br />Chris
<br />
<br />27 m w/CF
<br />
<br />
<br />
Found an update on the PTC124 drug:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.sciencedaily.com/releases/2008/02/080205123821.htm
">http://www.sciencedaily.com/re...8/02/080205123821.htm
</a>
Anyone have any clue on the timeline on this drug?
Also, I goggled it but couldn't find a good source. I thought I have seen it on here before, but could somebody please supply a link listing the cf nonsense mutations? I'd appreciate it.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.sciencedaily.com/releases/2008/02/080205123821.htm
">http://www.sciencedaily.com/re...8/02/080205123821.htm
</a>
Anyone have any clue on the timeline on this drug?
Also, I goggled it but couldn't find a good source. I thought I have seen it on here before, but could somebody please supply a link listing the cf nonsense mutations? I'd appreciate it.
Found an update on the PTC124 drug:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.sciencedaily.com/releases/2008/02/080205123821.htm
">http://www.sciencedaily.com/re...8/02/080205123821.htm
</a>
Anyone have any clue on the timeline on this drug?
Also, I goggled it but couldn't find a good source. I thought I have seen it on here before, but could somebody please supply a link listing the cf nonsense mutations? I'd appreciate it.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.sciencedaily.com/releases/2008/02/080205123821.htm
">http://www.sciencedaily.com/re...8/02/080205123821.htm
</a>
Anyone have any clue on the timeline on this drug?
Also, I goggled it but couldn't find a good source. I thought I have seen it on here before, but could somebody please supply a link listing the cf nonsense mutations? I'd appreciate it.
Found an update on the PTC124 drug:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.sciencedaily.com/releases/2008/02/080205123821.htm
">http://www.sciencedaily.com/re...8/02/080205123821.htm
</a>
Anyone have any clue on the timeline on this drug?
Also, I goggled it but couldn't find a good source. I thought I have seen it on here before, but could somebody please supply a link listing the cf nonsense mutations? I'd appreciate it.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.sciencedaily.com/releases/2008/02/080205123821.htm
">http://www.sciencedaily.com/re...8/02/080205123821.htm
</a>
Anyone have any clue on the timeline on this drug?
Also, I goggled it but couldn't find a good source. I thought I have seen it on here before, but could somebody please supply a link listing the cf nonsense mutations? I'd appreciate it.
Found an update on the PTC124 drug:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.sciencedaily.com/releases/2008/02/080205123821.htm
">http://www.sciencedaily.com/re...8/02/080205123821.htm
</a>
Anyone have any clue on the timeline on this drug?
Also, I goggled it but couldn't find a good source. I thought I have seen it on here before, but could somebody please supply a link listing the cf nonsense mutations? I'd appreciate it.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.sciencedaily.com/releases/2008/02/080205123821.htm
">http://www.sciencedaily.com/re...8/02/080205123821.htm
</a>
Anyone have any clue on the timeline on this drug?
Also, I goggled it but couldn't find a good source. I thought I have seen it on here before, but could somebody please supply a link listing the cf nonsense mutations? I'd appreciate it.
Found an update on the PTC124 drug:
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.sciencedaily.com/releases/2008/02/080205123821.htm
">http://www.sciencedaily.com/re...8/02/080205123821.htm
</a><br />
<br />
<br />Anyone have any clue on the timeline on this drug?
<br />
<br />
<br />Also, I goggled it but couldn't find a good source. I thought I have seen it on here before, but could somebody please supply a link listing the cf nonsense mutations? I'd appreciate it.
<br />
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.sciencedaily.com/releases/2008/02/080205123821.htm
">http://www.sciencedaily.com/re...8/02/080205123821.htm
</a><br />
<br />
<br />Anyone have any clue on the timeline on this drug?
<br />
<br />
<br />Also, I goggled it but couldn't find a good source. I thought I have seen it on here before, but could somebody please supply a link listing the cf nonsense mutations? I'd appreciate it.
<br />