Information Hard to Get

B

bdd9623

Guest
Hi everyone! Well I am through the first week of the wait (hopefully, Monday was a holiday). I am better and a little less crazy. My husband ran into a friend of his from high school and apparently his job is a research nurse under cystic fibrosis grants. He was able to answer many of our questions. While he believes Aidan has it (he has every symptom) he also believes there is a strong chance for it being a mild case. With the drugs, etc out there today he has given us hope that he can live to a ripe old age. Maybe not 70 or 80, but certainly 50 or 60.

Just keep praying and keeping busy.

Thanks again for everyone's help and honesty. Worth alot more than a pat on the back!
 
B

bdd9623

Guest
Hi everyone! Well I am through the first week of the wait (hopefully, Monday was a holiday). I am better and a little less crazy. My husband ran into a friend of his from high school and apparently his job is a research nurse under cystic fibrosis grants. He was able to answer many of our questions. While he believes Aidan has it (he has every symptom) he also believes there is a strong chance for it being a mild case. With the drugs, etc out there today he has given us hope that he can live to a ripe old age. Maybe not 70 or 80, but certainly 50 or 60.

Just keep praying and keeping busy.

Thanks again for everyone's help and honesty. Worth alot more than a pat on the back!
 
B

bdd9623

Guest
Hi everyone! Well I am through the first week of the wait (hopefully, Monday was a holiday). I am better and a little less crazy. My husband ran into a friend of his from high school and apparently his job is a research nurse under cystic fibrosis grants. He was able to answer many of our questions. While he believes Aidan has it (he has every symptom) he also believes there is a strong chance for it being a mild case. With the drugs, etc out there today he has given us hope that he can live to a ripe old age. Maybe not 70 or 80, but certainly 50 or 60.

Just keep praying and keeping busy.

Thanks again for everyone's help and honesty. Worth alot more than a pat on the back!
 
B

bdd9623

Guest
Hi everyone! Well I am through the first week of the wait (hopefully, Monday was a holiday). I am better and a little less crazy. My husband ran into a friend of his from high school and apparently his job is a research nurse under cystic fibrosis grants. He was able to answer many of our questions. While he believes Aidan has it (he has every symptom) he also believes there is a strong chance for it being a mild case. With the drugs, etc out there today he has given us hope that he can live to a ripe old age. Maybe not 70 or 80, but certainly 50 or 60.

Just keep praying and keeping busy.

Thanks again for everyone's help and honesty. Worth alot more than a pat on the back!
 
B

bdd9623

Guest
Hi everyone! Well I am through the first week of the wait (hopefully, Monday was a holiday). I am better and a little less crazy. My husband ran into a friend of his from high school and apparently his job is a research nurse under cystic fibrosis grants. He was able to answer many of our questions. While he believes Aidan has it (he has every symptom) he also believes there is a strong chance for it being a mild case. With the drugs, etc out there today he has given us hope that he can live to a ripe old age. Maybe not 70 or 80, but certainly 50 or 60.
<br />
<br />Just keep praying and keeping busy.
<br />
<br />Thanks again for everyone's help and honesty. Worth alot more than a pat on the back!
 
J

Juliet

New member
There's a project about genetics and clinical studies that Johns Hopkins is doing called CFTR2. It's an international project. The data will be put online sometime in the near future. You can get a bit more info about it here: <a target=_blank class=ftalternatingbarlinklarge href="http://www.genet.sickkids.on.ca/cftr/Home.html">http://www.genet.sickkids.on.ca/cftr/Home.html</a> I'm the patient representative on the project, which will probably get this post deleted.... <img src="i/expressions/face-icon-small-shocked.gif" border="0"> but it is very comprehensive and will be listing clinical data in a statistical manner for most mutations that have been identified. Some of the rarer ones with fewer than 25 people will not have as much aggregated info due to privacy concerns. For now if you go to the website above you can get a lot of info about where on the protein the specific mutations are located and hence what kind of failure they cause in CFTR. There are also many links to scientific papers about various mutation studies. ~Juliet
 
J

Juliet

New member
There's a project about genetics and clinical studies that Johns Hopkins is doing called CFTR2. It's an international project. The data will be put online sometime in the near future. You can get a bit more info about it here: <a target=_blank class=ftalternatingbarlinklarge href="http://www.genet.sickkids.on.ca/cftr/Home.html">http://www.genet.sickkids.on.ca/cftr/Home.html</a> I'm the patient representative on the project, which will probably get this post deleted.... <img src="i/expressions/face-icon-small-shocked.gif" border="0"> but it is very comprehensive and will be listing clinical data in a statistical manner for most mutations that have been identified. Some of the rarer ones with fewer than 25 people will not have as much aggregated info due to privacy concerns. For now if you go to the website above you can get a lot of info about where on the protein the specific mutations are located and hence what kind of failure they cause in CFTR. There are also many links to scientific papers about various mutation studies. ~Juliet
 
J

Juliet

New member
There's a project about genetics and clinical studies that Johns Hopkins is doing called CFTR2. It's an international project. The data will be put online sometime in the near future. You can get a bit more info about it here: <a target=_blank class=ftalternatingbarlinklarge href="http://www.genet.sickkids.on.ca/cftr/Home.html">http://www.genet.sickkids.on.ca/cftr/Home.html</a> I'm the patient representative on the project, which will probably get this post deleted.... <img src="i/expressions/face-icon-small-shocked.gif" border="0"> but it is very comprehensive and will be listing clinical data in a statistical manner for most mutations that have been identified. Some of the rarer ones with fewer than 25 people will not have as much aggregated info due to privacy concerns. For now if you go to the website above you can get a lot of info about where on the protein the specific mutations are located and hence what kind of failure they cause in CFTR. There are also many links to scientific papers about various mutation studies. ~Juliet
 
J

Juliet

New member
There's a project about genetics and clinical studies that Johns Hopkins is doing called CFTR2. It's an international project. The data will be put online sometime in the near future. You can get a bit more info about it here: <a target=_blank class=ftalternatingbarlinklarge href="http://www.genet.sickkids.on.ca/cftr/Home.html">http://www.genet.sickkids.on.ca/cftr/Home.html</a> I'm the patient representative on the project, which will probably get this post deleted.... <img src="i/expressions/face-icon-small-shocked.gif" border="0"> but it is very comprehensive and will be listing clinical data in a statistical manner for most mutations that have been identified. Some of the rarer ones with fewer than 25 people will not have as much aggregated info due to privacy concerns. For now if you go to the website above you can get a lot of info about where on the protein the specific mutations are located and hence what kind of failure they cause in CFTR. There are also many links to scientific papers about various mutation studies. ~Juliet
 
J

Juliet

New member
There's a project about genetics and clinical studies that Johns Hopkins is doing called CFTR2. It's an international project. The data will be put online sometime in the near future. You can get a bit more info about it here: <a target=_blank class=ftalternatingbarlinklarge href="http://www.genet.sickkids.on.ca/cftr/Home.html">http://www.genet.sickkids.on.ca/cftr/Home.html</a> I'm the patient representative on the project, which will probably get this post deleted.... <img src="i/expressions/face-icon-small-shocked.gif" border="0"> but it is very comprehensive and will be listing clinical data in a statistical manner for most mutations that have been identified. Some of the rarer ones with fewer than 25 people will not have as much aggregated info due to privacy concerns. For now if you go to the website above you can get a lot of info about where on the protein the specific mutations are located and hence what kind of failure they cause in CFTR. There are also many links to scientific papers about various mutation studies. ~Juliet
 
B

bdd9623

Guest
Thanks Juliet. I am not quite there yet. I have no idea of what mutations he has. I've been doing well with alot of positive feedback. But it has come home to me that even though prognosis today is good, if anything were to go wrong, god forbid, it's not good. Also, I have a son with similar symptoms that has seizure spectrum disorder. If he has it also, then I don't know the ramifications. I am still having a difficult time getting my hands around the fact that I may have a child with CF.
 
B

bdd9623

Guest
Thanks Juliet. I am not quite there yet. I have no idea of what mutations he has. I've been doing well with alot of positive feedback. But it has come home to me that even though prognosis today is good, if anything were to go wrong, god forbid, it's not good. Also, I have a son with similar symptoms that has seizure spectrum disorder. If he has it also, then I don't know the ramifications. I am still having a difficult time getting my hands around the fact that I may have a child with CF.
 
B

bdd9623

Guest
Thanks Juliet. I am not quite there yet. I have no idea of what mutations he has. I've been doing well with alot of positive feedback. But it has come home to me that even though prognosis today is good, if anything were to go wrong, god forbid, it's not good. Also, I have a son with similar symptoms that has seizure spectrum disorder. If he has it also, then I don't know the ramifications. I am still having a difficult time getting my hands around the fact that I may have a child with CF.
 
B

bdd9623

Guest
Thanks Juliet. I am not quite there yet. I have no idea of what mutations he has. I've been doing well with alot of positive feedback. But it has come home to me that even though prognosis today is good, if anything were to go wrong, god forbid, it's not good. Also, I have a son with similar symptoms that has seizure spectrum disorder. If he has it also, then I don't know the ramifications. I am still having a difficult time getting my hands around the fact that I may have a child with CF.
 
B

bdd9623

Guest
Thanks Juliet. I am not quite there yet. I have no idea of what mutations he has. I've been doing well with alot of positive feedback. But it has come home to me that even though prognosis today is good, if anything were to go wrong, god forbid, it's not good. Also, I have a son with similar symptoms that has seizure spectrum disorder. If he has it also, then I don't know the ramifications. I am still having a difficult time getting my hands around the fact that I may have a child with CF.
 
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