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Canadian vs. US lifespan
- Thread starter tessa55454
- Start date
harriett, I also caught that on page 21, and thought the same thing. I also noticed that the way they are getting and useng percentage's etc. was by taken only 10 patients ranging in multiple age's out of a certain amount of clinics. To me unless they use data on evry patient ,how will we really know the truth?
Also, they discuss gene mutations, which here there is a lot of controversy with a lot of people that gene mutations have nothing to do with prognois or the outcome. They did not use older patients with CF or ones that were diagnoised later in life, stated it was because of their milder mutations, and milder disease. This confuse's me because yes I do believe that gene mutations do give doctors an idea of how this disease may attack a CF person, and Steven from Ambrys can tell you if a mutation will cause typical CF, or a milder form , or not for sure. But, yet we all know 2 CFpeople with the same mutations can have a different progress of the disease. And the mutations can be classified.
Sorry I'm getting carried away here. They know so much about the DF508, but, there will be more and more found as time goes on. The gene thing can get very complicated, I have studied for yrs on the coding of a gene, because Mak has the DF508, and one that so rare,now there are 3kids with the same mutations found so far in the whole world. It has been classified as a 2, same catogory as the Delta class2, and I have seen different ups and downs with her health,and the doctors will say , oh this is because of the other mutation.
This disease is so freaking complexed, it can make you crazy. I do believe that nutritional support and transplant's play a vital role, especially nutritional. Just think, 25 or so yrs ago they didnt know how to control the nutritional part, meaning the exact kind of enzymes etc.
I am very impressed with the Honesty Canadas Foundation is .
Just reading the first page about CF, years ago, you would read that here, with our CFF also.Now days the word fatal or terminal is Rarely seen, it has been changed to genetic'Chronic' disease.Yes, I am all for being positive, but I want the Truth also.. I think sugar coated it is for the benefit of where the best clinic might be or how the CF
foundation looks and most of all the political stuff behind the pharmacutical companies.
I am thankful for CFF, and the doctors that really care. But, geeezzzz , I want to know the Scientist personally, and I know there is someone out there that has the answer ,but, that person doesn't even know that yet.
That's why putting Face's to CF and much more awareness is needed, and needed now.
Thankyou Adrinne, from Canada, for the link. It did work , and thanks for sharing. Would love to know more on how you think CF is treated there and the care and knowledge , and treatment plans if you would.
Bless us all,karla<img src="i/expressions/rose.gif" border="0">
Also, they discuss gene mutations, which here there is a lot of controversy with a lot of people that gene mutations have nothing to do with prognois or the outcome. They did not use older patients with CF or ones that were diagnoised later in life, stated it was because of their milder mutations, and milder disease. This confuse's me because yes I do believe that gene mutations do give doctors an idea of how this disease may attack a CF person, and Steven from Ambrys can tell you if a mutation will cause typical CF, or a milder form , or not for sure. But, yet we all know 2 CFpeople with the same mutations can have a different progress of the disease. And the mutations can be classified.
Sorry I'm getting carried away here. They know so much about the DF508, but, there will be more and more found as time goes on. The gene thing can get very complicated, I have studied for yrs on the coding of a gene, because Mak has the DF508, and one that so rare,now there are 3kids with the same mutations found so far in the whole world. It has been classified as a 2, same catogory as the Delta class2, and I have seen different ups and downs with her health,and the doctors will say , oh this is because of the other mutation.
This disease is so freaking complexed, it can make you crazy. I do believe that nutritional support and transplant's play a vital role, especially nutritional. Just think, 25 or so yrs ago they didnt know how to control the nutritional part, meaning the exact kind of enzymes etc.
I am very impressed with the Honesty Canadas Foundation is .
Just reading the first page about CF, years ago, you would read that here, with our CFF also.Now days the word fatal or terminal is Rarely seen, it has been changed to genetic'Chronic' disease.Yes, I am all for being positive, but I want the Truth also.. I think sugar coated it is for the benefit of where the best clinic might be or how the CF
foundation looks and most of all the political stuff behind the pharmacutical companies.
I am thankful for CFF, and the doctors that really care. But, geeezzzz , I want to know the Scientist personally, and I know there is someone out there that has the answer ,but, that person doesn't even know that yet.
That's why putting Face's to CF and much more awareness is needed, and needed now.
Thankyou Adrinne, from Canada, for the link. It did work , and thanks for sharing. Would love to know more on how you think CF is treated there and the care and knowledge , and treatment plans if you would.
Bless us all,karla<img src="i/expressions/rose.gif" border="0">
harriett, I also caught that on page 21, and thought the same thing. I also noticed that the way they are getting and useng percentage's etc. was by taken only 10 patients ranging in multiple age's out of a certain amount of clinics. To me unless they use data on evry patient ,how will we really know the truth?
Also, they discuss gene mutations, which here there is a lot of controversy with a lot of people that gene mutations have nothing to do with prognois or the outcome. They did not use older patients with CF or ones that were diagnoised later in life, stated it was because of their milder mutations, and milder disease. This confuse's me because yes I do believe that gene mutations do give doctors an idea of how this disease may attack a CF person, and Steven from Ambrys can tell you if a mutation will cause typical CF, or a milder form , or not for sure. But, yet we all know 2 CFpeople with the same mutations can have a different progress of the disease. And the mutations can be classified.
Sorry I'm getting carried away here. They know so much about the DF508, but, there will be more and more found as time goes on. The gene thing can get very complicated, I have studied for yrs on the coding of a gene, because Mak has the DF508, and one that so rare,now there are 3kids with the same mutations found so far in the whole world. It has been classified as a 2, same catogory as the Delta class2, and I have seen different ups and downs with her health,and the doctors will say , oh this is because of the other mutation.
This disease is so freaking complexed, it can make you crazy. I do believe that nutritional support and transplant's play a vital role, especially nutritional. Just think, 25 or so yrs ago they didnt know how to control the nutritional part, meaning the exact kind of enzymes etc.
I am very impressed with the Honesty Canadas Foundation is .
Just reading the first page about CF, years ago, you would read that here, with our CFF also.Now days the word fatal or terminal is Rarely seen, it has been changed to genetic'Chronic' disease.Yes, I am all for being positive, but I want the Truth also.. I think sugar coated it is for the benefit of where the best clinic might be or how the CF
foundation looks and most of all the political stuff behind the pharmacutical companies.
I am thankful for CFF, and the doctors that really care. But, geeezzzz , I want to know the Scientist personally, and I know there is someone out there that has the answer ,but, that person doesn't even know that yet.
That's why putting Face's to CF and much more awareness is needed, and needed now.
Thankyou Adrinne, from Canada, for the link. It did work , and thanks for sharing. Would love to know more on how you think CF is treated there and the care and knowledge , and treatment plans if you would.
Bless us all,karla<img src="i/expressions/rose.gif" border="0">
Also, they discuss gene mutations, which here there is a lot of controversy with a lot of people that gene mutations have nothing to do with prognois or the outcome. They did not use older patients with CF or ones that were diagnoised later in life, stated it was because of their milder mutations, and milder disease. This confuse's me because yes I do believe that gene mutations do give doctors an idea of how this disease may attack a CF person, and Steven from Ambrys can tell you if a mutation will cause typical CF, or a milder form , or not for sure. But, yet we all know 2 CFpeople with the same mutations can have a different progress of the disease. And the mutations can be classified.
Sorry I'm getting carried away here. They know so much about the DF508, but, there will be more and more found as time goes on. The gene thing can get very complicated, I have studied for yrs on the coding of a gene, because Mak has the DF508, and one that so rare,now there are 3kids with the same mutations found so far in the whole world. It has been classified as a 2, same catogory as the Delta class2, and I have seen different ups and downs with her health,and the doctors will say , oh this is because of the other mutation.
This disease is so freaking complexed, it can make you crazy. I do believe that nutritional support and transplant's play a vital role, especially nutritional. Just think, 25 or so yrs ago they didnt know how to control the nutritional part, meaning the exact kind of enzymes etc.
I am very impressed with the Honesty Canadas Foundation is .
Just reading the first page about CF, years ago, you would read that here, with our CFF also.Now days the word fatal or terminal is Rarely seen, it has been changed to genetic'Chronic' disease.Yes, I am all for being positive, but I want the Truth also.. I think sugar coated it is for the benefit of where the best clinic might be or how the CF
foundation looks and most of all the political stuff behind the pharmacutical companies.
I am thankful for CFF, and the doctors that really care. But, geeezzzz , I want to know the Scientist personally, and I know there is someone out there that has the answer ,but, that person doesn't even know that yet.
That's why putting Face's to CF and much more awareness is needed, and needed now.
Thankyou Adrinne, from Canada, for the link. It did work , and thanks for sharing. Would love to know more on how you think CF is treated there and the care and knowledge , and treatment plans if you would.
Bless us all,karla<img src="i/expressions/rose.gif" border="0">
harriett, I also caught that on page 21, and thought the same thing. I also noticed that the way they are getting and useng percentage's etc. was by taken only 10 patients ranging in multiple age's out of a certain amount of clinics. To me unless they use data on evry patient ,how will we really know the truth?
<br />
<br />Also, they discuss gene mutations, which here there is a lot of controversy with a lot of people that gene mutations have nothing to do with prognois or the outcome. They did not use older patients with CF or ones that were diagnoised later in life, stated it was because of their milder mutations, and milder disease. This confuse's me because yes I do believe that gene mutations do give doctors an idea of how this disease may attack a CF person, and Steven from Ambrys can tell you if a mutation will cause typical CF, or a milder form , or not for sure. But, yet we all know 2 CFpeople with the same mutations can have a different progress of the disease. And the mutations can be classified.
<br />
<br />Sorry I'm getting carried away here. They know so much about the DF508, but, there will be more and more found as time goes on. The gene thing can get very complicated, I have studied for yrs on the coding of a gene, because Mak has the DF508, and one that so rare,now there are 3kids with the same mutations found so far in the whole world. It has been classified as a 2, same catogory as the Delta class2, and I have seen different ups and downs with her health,and the doctors will say , oh this is because of the other mutation.
<br />
<br />This disease is so freaking complexed, it can make you crazy. I do believe that nutritional support and transplant's play a vital role, especially nutritional. Just think, 25 or so yrs ago they didnt know how to control the nutritional part, meaning the exact kind of enzymes etc.
<br />
<br />I am very impressed with the Honesty Canadas Foundation is .
<br />
<br />Just reading the first page about CF, years ago, you would read that here, with our CFF also.Now days the word fatal or terminal is Rarely seen, it has been changed to genetic'Chronic' disease.Yes, I am all for being positive, but I want the Truth also.. I think sugar coated it is for the benefit of where the best clinic might be or how the CF
<br />foundation looks and most of all the political stuff behind the pharmacutical companies.
<br />
<br />I am thankful for CFF, and the doctors that really care. But, geeezzzz , I want to know the Scientist personally, and I know there is someone out there that has the answer ,but, that person doesn't even know that yet.
<br />
<br />That's why putting Face's to CF and much more awareness is needed, and needed now.
<br />
<br />Thankyou Adrinne, from Canada, for the link. It did work , and thanks for sharing. Would love to know more on how you think CF is treated there and the care and knowledge , and treatment plans if you would.
<br />
<br />Bless us all,karla<img src="i/expressions/rose.gif" border="0">
<br />
<br />Also, they discuss gene mutations, which here there is a lot of controversy with a lot of people that gene mutations have nothing to do with prognois or the outcome. They did not use older patients with CF or ones that were diagnoised later in life, stated it was because of their milder mutations, and milder disease. This confuse's me because yes I do believe that gene mutations do give doctors an idea of how this disease may attack a CF person, and Steven from Ambrys can tell you if a mutation will cause typical CF, or a milder form , or not for sure. But, yet we all know 2 CFpeople with the same mutations can have a different progress of the disease. And the mutations can be classified.
<br />
<br />Sorry I'm getting carried away here. They know so much about the DF508, but, there will be more and more found as time goes on. The gene thing can get very complicated, I have studied for yrs on the coding of a gene, because Mak has the DF508, and one that so rare,now there are 3kids with the same mutations found so far in the whole world. It has been classified as a 2, same catogory as the Delta class2, and I have seen different ups and downs with her health,and the doctors will say , oh this is because of the other mutation.
<br />
<br />This disease is so freaking complexed, it can make you crazy. I do believe that nutritional support and transplant's play a vital role, especially nutritional. Just think, 25 or so yrs ago they didnt know how to control the nutritional part, meaning the exact kind of enzymes etc.
<br />
<br />I am very impressed with the Honesty Canadas Foundation is .
<br />
<br />Just reading the first page about CF, years ago, you would read that here, with our CFF also.Now days the word fatal or terminal is Rarely seen, it has been changed to genetic'Chronic' disease.Yes, I am all for being positive, but I want the Truth also.. I think sugar coated it is for the benefit of where the best clinic might be or how the CF
<br />foundation looks and most of all the political stuff behind the pharmacutical companies.
<br />
<br />I am thankful for CFF, and the doctors that really care. But, geeezzzz , I want to know the Scientist personally, and I know there is someone out there that has the answer ,but, that person doesn't even know that yet.
<br />
<br />That's why putting Face's to CF and much more awareness is needed, and needed now.
<br />
<br />Thankyou Adrinne, from Canada, for the link. It did work , and thanks for sharing. Would love to know more on how you think CF is treated there and the care and knowledge , and treatment plans if you would.
<br />
<br />Bless us all,karla<img src="i/expressions/rose.gif" border="0">
<div class="FTQUOTE"><begin quote>Yes, I am all for being positive, but I want the Truth also</end quote></div>
Exactly. 'Projected' numbers and what 'they' hope to see... well, I hope to see it too. Don't we all!!! But don't sugarcoat things when it comes to the reality of today... I can't help but be a little frustrated (ok, a lot sometimes) and even a little insulted when I read documents where reality and 'projections' differ by a couple decades. We don't live in a projected future.
Exactly. 'Projected' numbers and what 'they' hope to see... well, I hope to see it too. Don't we all!!! But don't sugarcoat things when it comes to the reality of today... I can't help but be a little frustrated (ok, a lot sometimes) and even a little insulted when I read documents where reality and 'projections' differ by a couple decades. We don't live in a projected future.
<div class="FTQUOTE"><begin quote>Yes, I am all for being positive, but I want the Truth also</end quote>
Exactly. 'Projected' numbers and what 'they' hope to see... well, I hope to see it too. Don't we all!!! But don't sugarcoat things when it comes to the reality of today... I can't help but be a little frustrated (ok, a lot sometimes) and even a little insulted when I read documents where reality and 'projections' differ by a couple decades. We don't live in a projected future.
Exactly. 'Projected' numbers and what 'they' hope to see... well, I hope to see it too. Don't we all!!! But don't sugarcoat things when it comes to the reality of today... I can't help but be a little frustrated (ok, a lot sometimes) and even a little insulted when I read documents where reality and 'projections' differ by a couple decades. We don't live in a projected future.
<div class="FTQUOTE"><begin quote>Yes, I am all for being positive, but I want the Truth also</end quote>
<br />Exactly. 'Projected' numbers and what 'they' hope to see... well, I hope to see it too. Don't we all!!! But don't sugarcoat things when it comes to the reality of today... I can't help but be a little frustrated (ok, a lot sometimes) and even a little insulted when I read documents where reality and 'projections' differ by a couple decades. We don't live in a projected future.
<br />Exactly. 'Projected' numbers and what 'they' hope to see... well, I hope to see it too. Don't we all!!! But don't sugarcoat things when it comes to the reality of today... I can't help but be a little frustrated (ok, a lot sometimes) and even a little insulted when I read documents where reality and 'projections' differ by a couple decades. We don't live in a projected future.