Terminating pregnancy?

[davemn]

I know you are just trying to provide this person with all the best and useful information that she may or may not find else ware, along with providing her some real insight however; I feel as if telling her these "worse-case" situations from YOUR POINT OF VIEW, regarding your experiences, and to post vague medical generalizations without learning more about her situation to properly offer factual data regarding her child... I think is grossly irresponsible.

To state what is or what is not a poorer clinical outcome for her child without any reliable medical statistics/research/information but just say "a rule of thumb" can be devastating to someone who may not know all the facts. I think users to these types of forums need to really check their emotions and personal beliefs at the log in screen and just try and be sensitive to the author of the thread and offer the best ligitament, reliable, unbiased help they can and keep personal onions to themselves.

I believe it's the responsibility of the patient/parent to consult professionals regarding their and/or their family's health and welfare, and I think the internet can be a very useful tool for someone like my wife and I who like 2 months ago didn't even know what CF was but to learn our newborn was just diagnosed. But what we have learned is many websites, forums and other internet communities are out of date, misinformed, to generalized, and/or just plain not accurate. Not to mention some users of medical based forums like this bring "personal luggage" (as they say) and poison the community with poorly researched information or in rare cases just out right lying.

I hope this person and others have the strength and resources to get the most accurate and trustworthy information and support so the CF patient can live a long and healthy life.

 

[davemn]

I know you are just trying to provide this person with all the best and useful information that she may or may not find else ware, along with providing her some real insight however; I feel as if telling her these "worse-case" situations from YOUR POINT OF VIEW, regarding your experiences, and to post vague medical generalizations without learning more about her situation to properly offer factual data regarding her child... I think is grossly irresponsible.

To state what is or what is not a poorer clinical outcome for her child without any reliable medical statistics/research/information but just say "a rule of thumb" can be devastating to someone who may not know all the facts. I think users to these types of forums need to really check their emotions and personal beliefs at the log in screen and just try and be sensitive to the author of the thread and offer the best ligitament, reliable, unbiased help they can and keep personal onions to themselves.

I believe it's the responsibility of the patient/parent to consult professionals regarding their and/or their family's health and welfare, and I think the internet can be a very useful tool for someone like my wife and I who like 2 months ago didn't even know what CF was but to learn our newborn was just diagnosed. But what we have learned is many websites, forums and other internet communities are out of date, misinformed, to generalized, and/or just plain not accurate. Not to mention some users of medical based forums like this bring "personal luggage" (as they say) and poison the community with poorly researched information or in rare cases just out right lying.

I hope this person and others have the strength and resources to get the most accurate and trustworthy information and support so the CF patient can live a long and healthy life.

 

[davemn]

I know you are just trying to provide this person with all the best and useful information that she may or may not find else ware, along with providing her some real insight however; I feel as if telling her these "worse-case" situations from YOUR POINT OF VIEW, regarding your experiences, and to post vague medical generalizations without learning more about her situation to properly offer factual data regarding her child... I think is grossly irresponsible.

To state what is or what is not a poorer clinical outcome for her child without any reliable medical statistics/research/information but just say "a rule of thumb" can be devastating to someone who may not know all the facts. I think users to these types of forums need to really check their emotions and personal beliefs at the log in screen and just try and be sensitive to the author of the thread and offer the best ligitament, reliable, unbiased help they can and keep personal onions to themselves.

I believe it's the responsibility of the patient/parent to consult professionals regarding their and/or their family's health and welfare, and I think the internet can be a very useful tool for someone like my wife and I who like 2 months ago didn't even know what CF was but to learn our newborn was just diagnosed. But what we have learned is many websites, forums and other internet communities are out of date, misinformed, to generalized, and/or just plain not accurate. Not to mention some users of medical based forums like this bring "personal luggage" (as they say) and poison the community with poorly researched information or in rare cases just out right lying.

I hope this person and others have the strength and resources to get the most accurate and trustworthy information and support so the CF patient can live a long and healthy life.

 

[davemn]

I know you are just trying to provide this person with all the best and useful information that she may or may not find else ware, along with providing her some real insight however; I feel as if telling her these "worse-case" situations from YOUR POINT OF VIEW, regarding your experiences, and to post vague medical generalizations without learning more about her situation to properly offer factual data regarding her child... I think is grossly irresponsible.

To state what is or what is not a poorer clinical outcome for her child without any reliable medical statistics/research/information but just say "a rule of thumb" can be devastating to someone who may not know all the facts. I think users to these types of forums need to really check their emotions and personal beliefs at the log in screen and just try and be sensitive to the author of the thread and offer the best ligitament, reliable, unbiased help they can and keep personal onions to themselves.

I believe it's the responsibility of the patient/parent to consult professionals regarding their and/or their family's health and welfare, and I think the internet can be a very useful tool for someone like my wife and I who like 2 months ago didn't even know what CF was but to learn our newborn was just diagnosed. But what we have learned is many websites, forums and other internet communities are out of date, misinformed, to generalized, and/or just plain not accurate. Not to mention some users of medical based forums like this bring "personal luggage" (as they say) and poison the community with poorly researched information or in rare cases just out right lying.

I hope this person and others have the strength and resources to get the most accurate and trustworthy information and support so the CF patient can live a long and healthy life.

 

[davemn]

I know you are just trying to provide this person with all the best and useful information that she may or may not find else ware, along with providing her some real insight however; I feel as if telling her these "worse-case" situations from YOUR POINT OF VIEW, regarding your experiences, and to post vague medical generalizations without learning more about her situation to properly offer factual data regarding her child... I think is grossly irresponsible.
<br />
<br />To state what is or what is not a poorer clinical outcome for her child without any reliable medical statistics/research/information but just say "a rule of thumb" can be devastating to someone who may not know all the facts. I think users to these types of forums need to really check their emotions and personal beliefs at the log in screen and just try and be sensitive to the author of the thread and offer the best ligitament, reliable, unbiased help they can and keep personal onions to themselves.
<br />
<br />I believe it's the responsibility of the patient/parent to consult professionals regarding their and/or their family's health and welfare, and I think the internet can be a very useful tool for someone like my wife and I who like 2 months ago didn't even know what CF was but to learn our newborn was just diagnosed. But what we have learned is many websites, forums and other internet communities are out of date, misinformed, to generalized, and/or just plain not accurate. Not to mention some users of medical based forums like this bring "personal luggage" (as they say) and poison the community with poorly researched information or in rare cases just out right lying.
<br />
<br />I hope this person and others have the strength and resources to get the most accurate and trustworthy information and support so the CF patient can live a long and healthy life.

 

[MargaritaChic]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CFHockeyMom</b></i>

DF508 is a class II type gene and the other w____x is probably a class I. The combination of the two typically yield a poorer clinical outcome. That's not necessarily the case but is a rule of thumb.</end quote></div>

I have read a similar post from CFHockeyMom in the past. I was upset by it, thinking that because my daughter's mutations are Class I and II that meant she would have a poor clinical outcome. I spoke to the genetic counselor at our clinic regarding the information (we go to the U of M clinic which is thought to be one of the best in the country). I was told that in reality gene mutations alone cannot predict clinical outcome. Siblings, who have the same CF genes (because they're siblings), have dramatically different clinical outcomes.

CF health/ or lackthereof depends on proactive medical treatment, environment, modifier genes (other genes that modify the way that CF genes are expressed), exercise, and compliance with medical therapy.

Chosing whether to knowingly have a baby with CF is not an easy decision. I am glad I did not have to make it, because I am not sure what I would have done. I am pro-choice also.

I can tell you a few things...
* Hearing my baby has CF was the hardest thing I have been through in my life.
* There is nothing in this world that compares to the love I feel for my daughter.
*Emma is our first (and will be our only) child. She is almost 3 months old. The doctors tell me that she is healthy, but she has CF. So we have to work hard to keep her healthy.
*CF will not define who my child is. She will be (and already is) so much more than a child with CF. She is beautiful, happy, loving... being her mother is my greatest joy in life.

Only you can decide what is best for you and your husband. Don't let any one person's journey decide what is best for you. As you can see there are differing severity of CF. No one can tell you how mild or severe your child's CF will be. What we can tell you (and it has already been expressed) is that the medical field has made many advances in treating CF and there will be many more. Each of us hopes and prays for the day when CF stands for CURE FOUND.

 

[MargaritaChic]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CFHockeyMom</b></i>

DF508 is a class II type gene and the other w____x is probably a class I. The combination of the two typically yield a poorer clinical outcome. That's not necessarily the case but is a rule of thumb.</end quote></div>

I have read a similar post from CFHockeyMom in the past. I was upset by it, thinking that because my daughter's mutations are Class I and II that meant she would have a poor clinical outcome. I spoke to the genetic counselor at our clinic regarding the information (we go to the U of M clinic which is thought to be one of the best in the country). I was told that in reality gene mutations alone cannot predict clinical outcome. Siblings, who have the same CF genes (because they're siblings), have dramatically different clinical outcomes.

CF health/ or lackthereof depends on proactive medical treatment, environment, modifier genes (other genes that modify the way that CF genes are expressed), exercise, and compliance with medical therapy.

Chosing whether to knowingly have a baby with CF is not an easy decision. I am glad I did not have to make it, because I am not sure what I would have done. I am pro-choice also.

I can tell you a few things...
* Hearing my baby has CF was the hardest thing I have been through in my life.
* There is nothing in this world that compares to the love I feel for my daughter.
*Emma is our first (and will be our only) child. She is almost 3 months old. The doctors tell me that she is healthy, but she has CF. So we have to work hard to keep her healthy.
*CF will not define who my child is. She will be (and already is) so much more than a child with CF. She is beautiful, happy, loving... being her mother is my greatest joy in life.

Only you can decide what is best for you and your husband. Don't let any one person's journey decide what is best for you. As you can see there are differing severity of CF. No one can tell you how mild or severe your child's CF will be. What we can tell you (and it has already been expressed) is that the medical field has made many advances in treating CF and there will be many more. Each of us hopes and prays for the day when CF stands for CURE FOUND.

 

[MargaritaChic]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CFHockeyMom</b></i>

DF508 is a class II type gene and the other w____x is probably a class I. The combination of the two typically yield a poorer clinical outcome. That's not necessarily the case but is a rule of thumb.</end quote></div>

I have read a similar post from CFHockeyMom in the past. I was upset by it, thinking that because my daughter's mutations are Class I and II that meant she would have a poor clinical outcome. I spoke to the genetic counselor at our clinic regarding the information (we go to the U of M clinic which is thought to be one of the best in the country). I was told that in reality gene mutations alone cannot predict clinical outcome. Siblings, who have the same CF genes (because they're siblings), have dramatically different clinical outcomes.

CF health/ or lackthereof depends on proactive medical treatment, environment, modifier genes (other genes that modify the way that CF genes are expressed), exercise, and compliance with medical therapy.

Chosing whether to knowingly have a baby with CF is not an easy decision. I am glad I did not have to make it, because I am not sure what I would have done. I am pro-choice also.

I can tell you a few things...
* Hearing my baby has CF was the hardest thing I have been through in my life.
* There is nothing in this world that compares to the love I feel for my daughter.
*Emma is our first (and will be our only) child. She is almost 3 months old. The doctors tell me that she is healthy, but she has CF. So we have to work hard to keep her healthy.
*CF will not define who my child is. She will be (and already is) so much more than a child with CF. She is beautiful, happy, loving... being her mother is my greatest joy in life.

Only you can decide what is best for you and your husband. Don't let any one person's journey decide what is best for you. As you can see there are differing severity of CF. No one can tell you how mild or severe your child's CF will be. What we can tell you (and it has already been expressed) is that the medical field has made many advances in treating CF and there will be many more. Each of us hopes and prays for the day when CF stands for CURE FOUND.

 

[MargaritaChic]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CFHockeyMom</b></i>

DF508 is a class II type gene and the other w____x is probably a class I. The combination of the two typically yield a poorer clinical outcome. That's not necessarily the case but is a rule of thumb.</end quote>

I have read a similar post from CFHockeyMom in the past. I was upset by it, thinking that because my daughter's mutations are Class I and II that meant she would have a poor clinical outcome. I spoke to the genetic counselor at our clinic regarding the information (we go to the U of M clinic which is thought to be one of the best in the country). I was told that in reality gene mutations alone cannot predict clinical outcome. Siblings, who have the same CF genes (because they're siblings), have dramatically different clinical outcomes.

CF health/ or lackthereof depends on proactive medical treatment, environment, modifier genes (other genes that modify the way that CF genes are expressed), exercise, and compliance with medical therapy.

Chosing whether to knowingly have a baby with CF is not an easy decision. I am glad I did not have to make it, because I am not sure what I would have done. I am pro-choice also.

I can tell you a few things...
* Hearing my baby has CF was the hardest thing I have been through in my life.
* There is nothing in this world that compares to the love I feel for my daughter.
*Emma is our first (and will be our only) child. She is almost 3 months old. The doctors tell me that she is healthy, but she has CF. So we have to work hard to keep her healthy.
*CF will not define who my child is. She will be (and already is) so much more than a child with CF. She is beautiful, happy, loving... being her mother is my greatest joy in life.

Only you can decide what is best for you and your husband. Don't let any one person's journey decide what is best for you. As you can see there are differing severity of CF. No one can tell you how mild or severe your child's CF will be. What we can tell you (and it has already been expressed) is that the medical field has made many advances in treating CF and there will be many more. Each of us hopes and prays for the day when CF stands for CURE FOUND.

 

[MargaritaChic]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CFHockeyMom</b></i>
<br />
<br />DF508 is a class II type gene and the other w____x is probably a class I. The combination of the two typically yield a poorer clinical outcome. That's not necessarily the case but is a rule of thumb.</end quote>
<br />
<br />I have read a similar post from CFHockeyMom in the past. I was upset by it, thinking that because my daughter's mutations are Class I and II that meant she would have a poor clinical outcome. I spoke to the genetic counselor at our clinic regarding the information (we go to the U of M clinic which is thought to be one of the best in the country). I was told that in reality gene mutations alone cannot predict clinical outcome. Siblings, who have the same CF genes (because they're siblings), have dramatically different clinical outcomes.
<br />
<br />CF health/ or lackthereof depends on proactive medical treatment, environment, modifier genes (other genes that modify the way that CF genes are expressed), exercise, and compliance with medical therapy.
<br />
<br />Chosing whether to knowingly have a baby with CF is not an easy decision. I am glad I did not have to make it, because I am not sure what I would have done. I am pro-choice also.
<br />
<br />I can tell you a few things...
<br />* Hearing my baby has CF was the hardest thing I have been through in my life.
<br />* There is nothing in this world that compares to the love I feel for my daughter.
<br />*Emma is our first (and will be our only) child. She is almost 3 months old. The doctors tell me that she is healthy, but she has CF. So we have to work hard to keep her healthy.
<br />*CF will not define who my child is. She will be (and already is) so much more than a child with CF. She is beautiful, happy, loving... being her mother is my greatest joy in life.
<br />
<br />Only you can decide what is best for you and your husband. Don't let any one person's journey decide what is best for you. As you can see there are differing severity of CF. No one can tell you how mild or severe your child's CF will be. What we can tell you (and it has already been expressed) is that the medical field has made many advances in treating CF and there will be many more. Each of us hopes and prays for the day when CF stands for CURE FOUND.

 

[CFHockeyMom]

It's not my information it's based on some research that I have quoted many times, including in my repsonse to MargaritaChic as well as that environment compliance, luck, etc all play into clinical outcome, <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=902&threadid=27955&highlight_key=y&keyword1=gene%20class">My reply to MargaritaChic</a>

If you doubt me, ask Steven in the Ambry thread in the Families section. Fact is Class I/II yields classic CF.

<div class="FTQUOTE"><begin quote>1: Thorax. 2005 Jul;60(7):558-63. Links
Genotype-phenotype correlation for pulmonary function in cystic fibrosis.de Gracia J, Mata F, Alvarez A, Casals T, Gatner S, Vendrell M, de la Rosa D, Guarner L, Hermosilla E.
Department of Pneumology, Hospital general Vall d'Hebron, Barcelona, Spain. jgracia@separ.es

BACKGROUND: Since the CFTR gene was cloned, more than 1000 mutations have been identified. To date, a clear relationship has not been established between genotype and the progression of lung damage. A study was undertaken of the relationship between genotype, progression of lung disease, and survival in adult patients with cystic fibrosis (CF). METHODS: A prospective cohort of adult patients with CF and two CFTR mutations followed up in an adult cystic fibrosis unit was analysed. Patients were classified according to functional effects of classes of CFTR mutations and were grouped based on the CFTR molecular position on the epithelial cell surface (I-II/I-II, I-II/III-V). Spirometric values, progression of lung disease, probability of survival, and clinical characteristics were analysed between groups. RESULTS: Seventy four patients were included in the study. Patients with genotype I-II/I-II had significantly lower current spirometric values (p < 0.001), greater loss of pulmonary function (p < 0.04), a higher proportion of end-stage lung disease (p < 0.001), a higher risk of suffering from moderate to severe lung disease (odds ratio 7.12 (95% CI 1.3 to 40.5)) and a lower probability of survival than patients with genotype I-II/III, I-II/IV and I-II/V (p < 0.001). CONCLUSIONS: The presence of class I or II mutations on both chromosomes is associated with worse respiratory disease and a lower probability of survival. </end quote></div>

When you say UofM, I'm assuming you mean University of Minnesota and yes, they consistently score very high on the CFF evaluations. However, the CFF does not evaluate clinics on a global basis so to say they are one of the best in the world is inaccurate. Unless, of course, you have some research to cite otherwise?

I was just trying to present both sides of the coin here and stated that if you look there are plenty of people on here who haven't had an easy journey. I cited Victorias blog as a single current example but there are certainly others. Getting replies from newly diagnosed parents and parents of young children is hardly getting good statistical data. I didn't see anywhere in the OP that she was only looking for the good side. But I forgot, I'm in the "blow sunshine up my butt" section of the forum.

 

[CFHockeyMom]

It's not my information it's based on some research that I have quoted many times, including in my repsonse to MargaritaChic as well as that environment compliance, luck, etc all play into clinical outcome, <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=902&threadid=27955&highlight_key=y&keyword1=gene%20class">My reply to MargaritaChic</a>

If you doubt me, ask Steven in the Ambry thread in the Families section. Fact is Class I/II yields classic CF.

<div class="FTQUOTE"><begin quote>1: Thorax. 2005 Jul;60(7):558-63. Links
Genotype-phenotype correlation for pulmonary function in cystic fibrosis.de Gracia J, Mata F, Alvarez A, Casals T, Gatner S, Vendrell M, de la Rosa D, Guarner L, Hermosilla E.
Department of Pneumology, Hospital general Vall d'Hebron, Barcelona, Spain. jgracia@separ.es

BACKGROUND: Since the CFTR gene was cloned, more than 1000 mutations have been identified. To date, a clear relationship has not been established between genotype and the progression of lung damage. A study was undertaken of the relationship between genotype, progression of lung disease, and survival in adult patients with cystic fibrosis (CF). METHODS: A prospective cohort of adult patients with CF and two CFTR mutations followed up in an adult cystic fibrosis unit was analysed. Patients were classified according to functional effects of classes of CFTR mutations and were grouped based on the CFTR molecular position on the epithelial cell surface (I-II/I-II, I-II/III-V). Spirometric values, progression of lung disease, probability of survival, and clinical characteristics were analysed between groups. RESULTS: Seventy four patients were included in the study. Patients with genotype I-II/I-II had significantly lower current spirometric values (p < 0.001), greater loss of pulmonary function (p < 0.04), a higher proportion of end-stage lung disease (p < 0.001), a higher risk of suffering from moderate to severe lung disease (odds ratio 7.12 (95% CI 1.3 to 40.5)) and a lower probability of survival than patients with genotype I-II/III, I-II/IV and I-II/V (p < 0.001). CONCLUSIONS: The presence of class I or II mutations on both chromosomes is associated with worse respiratory disease and a lower probability of survival. </end quote></div>

When you say UofM, I'm assuming you mean University of Minnesota and yes, they consistently score very high on the CFF evaluations. However, the CFF does not evaluate clinics on a global basis so to say they are one of the best in the world is inaccurate. Unless, of course, you have some research to cite otherwise?

I was just trying to present both sides of the coin here and stated that if you look there are plenty of people on here who haven't had an easy journey. I cited Victorias blog as a single current example but there are certainly others. Getting replies from newly diagnosed parents and parents of young children is hardly getting good statistical data. I didn't see anywhere in the OP that she was only looking for the good side. But I forgot, I'm in the "blow sunshine up my butt" section of the forum.

 

[CFHockeyMom]

It's not my information it's based on some research that I have quoted many times, including in my repsonse to MargaritaChic as well as that environment compliance, luck, etc all play into clinical outcome, <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=902&threadid=27955&highlight_key=y&keyword1=gene%20class">My reply to MargaritaChic</a>

If you doubt me, ask Steven in the Ambry thread in the Families section. Fact is Class I/II yields classic CF.

<div class="FTQUOTE"><begin quote>1: Thorax. 2005 Jul;60(7):558-63. Links
Genotype-phenotype correlation for pulmonary function in cystic fibrosis.de Gracia J, Mata F, Alvarez A, Casals T, Gatner S, Vendrell M, de la Rosa D, Guarner L, Hermosilla E.
Department of Pneumology, Hospital general Vall d'Hebron, Barcelona, Spain. jgracia@separ.es

BACKGROUND: Since the CFTR gene was cloned, more than 1000 mutations have been identified. To date, a clear relationship has not been established between genotype and the progression of lung damage. A study was undertaken of the relationship between genotype, progression of lung disease, and survival in adult patients with cystic fibrosis (CF). METHODS: A prospective cohort of adult patients with CF and two CFTR mutations followed up in an adult cystic fibrosis unit was analysed. Patients were classified according to functional effects of classes of CFTR mutations and were grouped based on the CFTR molecular position on the epithelial cell surface (I-II/I-II, I-II/III-V). Spirometric values, progression of lung disease, probability of survival, and clinical characteristics were analysed between groups. RESULTS: Seventy four patients were included in the study. Patients with genotype I-II/I-II had significantly lower current spirometric values (p < 0.001), greater loss of pulmonary function (p < 0.04), a higher proportion of end-stage lung disease (p < 0.001), a higher risk of suffering from moderate to severe lung disease (odds ratio 7.12 (95% CI 1.3 to 40.5)) and a lower probability of survival than patients with genotype I-II/III, I-II/IV and I-II/V (p < 0.001). CONCLUSIONS: The presence of class I or II mutations on both chromosomes is associated with worse respiratory disease and a lower probability of survival. </end quote></div>

When you say UofM, I'm assuming you mean University of Minnesota and yes, they consistently score very high on the CFF evaluations. However, the CFF does not evaluate clinics on a global basis so to say they are one of the best in the world is inaccurate. Unless, of course, you have some research to cite otherwise?

I was just trying to present both sides of the coin here and stated that if you look there are plenty of people on here who haven't had an easy journey. I cited Victorias blog as a single current example but there are certainly others. Getting replies from newly diagnosed parents and parents of young children is hardly getting good statistical data. I didn't see anywhere in the OP that she was only looking for the good side. But I forgot, I'm in the "blow sunshine up my butt" section of the forum.

 

[CFHockeyMom]

It's not my information it's based on some research that I have quoted many times, including in my repsonse to MargaritaChic as well as that environment compliance, luck, etc all play into clinical outcome, <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=902&threadid=27955&highlight_key=y&keyword1=gene%20class">My reply to MargaritaChic</a>

If you doubt me, ask Steven in the Ambry thread in the Families section. Fact is Class I/II yields classic CF.

<div class="FTQUOTE"><begin quote>1: Thorax. 2005 Jul;60(7):558-63. Links
Genotype-phenotype correlation for pulmonary function in cystic fibrosis.de Gracia J, Mata F, Alvarez A, Casals T, Gatner S, Vendrell M, de la Rosa D, Guarner L, Hermosilla E.
Department of Pneumology, Hospital general Vall d'Hebron, Barcelona, Spain. jgracia@separ.es

BACKGROUND: Since the CFTR gene was cloned, more than 1000 mutations have been identified. To date, a clear relationship has not been established between genotype and the progression of lung damage. A study was undertaken of the relationship between genotype, progression of lung disease, and survival in adult patients with cystic fibrosis (CF). METHODS: A prospective cohort of adult patients with CF and two CFTR mutations followed up in an adult cystic fibrosis unit was analysed. Patients were classified according to functional effects of classes of CFTR mutations and were grouped based on the CFTR molecular position on the epithelial cell surface (I-II/I-II, I-II/III-V). Spirometric values, progression of lung disease, probability of survival, and clinical characteristics were analysed between groups. RESULTS: Seventy four patients were included in the study. Patients with genotype I-II/I-II had significantly lower current spirometric values (p < 0.001), greater loss of pulmonary function (p < 0.04), a higher proportion of end-stage lung disease (p < 0.001), a higher risk of suffering from moderate to severe lung disease (odds ratio 7.12 (95% CI 1.3 to 40.5)) and a lower probability of survival than patients with genotype I-II/III, I-II/IV and I-II/V (p < 0.001). CONCLUSIONS: The presence of class I or II mutations on both chromosomes is associated with worse respiratory disease and a lower probability of survival. </end quote>

When you say UofM, I'm assuming you mean University of Minnesota and yes, they consistently score very high on the CFF evaluations. However, the CFF does not evaluate clinics on a global basis so to say they are one of the best in the world is inaccurate. Unless, of course, you have some research to cite otherwise?

I was just trying to present both sides of the coin here and stated that if you look there are plenty of people on here who haven't had an easy journey. I cited Victorias blog as a single current example but there are certainly others. Getting replies from newly diagnosed parents and parents of young children is hardly getting good statistical data. I didn't see anywhere in the OP that she was only looking for the good side. But I forgot, I'm in the "blow sunshine up my butt" section of the forum.

 

[CFHockeyMom]

It's not my information it's based on some research that I have quoted many times, including in my repsonse to MargaritaChic as well as that environment compliance, luck, etc all play into clinical outcome, <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=902&threadid=27955&highlight_key=y&keyword1=gene%20class">My reply to MargaritaChic</a>
<br />
<br />If you doubt me, ask Steven in the Ambry thread in the Families section. Fact is Class I/II yields classic CF.
<br />
<br /><div class="FTQUOTE"><begin quote>1: Thorax. 2005 Jul;60(7):558-63. Links
<br />Genotype-phenotype correlation for pulmonary function in cystic fibrosis.de Gracia J, Mata F, Alvarez A, Casals T, Gatner S, Vendrell M, de la Rosa D, Guarner L, Hermosilla E.
<br />Department of Pneumology, Hospital general Vall d'Hebron, Barcelona, Spain. jgracia@separ.es
<br />
<br />BACKGROUND: Since the CFTR gene was cloned, more than 1000 mutations have been identified. To date, a clear relationship has not been established between genotype and the progression of lung damage. A study was undertaken of the relationship between genotype, progression of lung disease, and survival in adult patients with cystic fibrosis (CF). METHODS: A prospective cohort of adult patients with CF and two CFTR mutations followed up in an adult cystic fibrosis unit was analysed. Patients were classified according to functional effects of classes of CFTR mutations and were grouped based on the CFTR molecular position on the epithelial cell surface (I-II/I-II, I-II/III-V). Spirometric values, progression of lung disease, probability of survival, and clinical characteristics were analysed between groups. RESULTS: Seventy four patients were included in the study. Patients with genotype I-II/I-II had significantly lower current spirometric values (p < 0.001), greater loss of pulmonary function (p < 0.04), a higher proportion of end-stage lung disease (p < 0.001), a higher risk of suffering from moderate to severe lung disease (odds ratio 7.12 (95% CI 1.3 to 40.5)) and a lower probability of survival than patients with genotype I-II/III, I-II/IV and I-II/V (p < 0.001). CONCLUSIONS: The presence of class I or II mutations on both chromosomes is associated with worse respiratory disease and a lower probability of survival. </end quote>
<br />
<br />When you say UofM, I'm assuming you mean University of Minnesota and yes, they consistently score very high on the CFF evaluations. However, the CFF does not evaluate clinics on a global basis so to say they are one of the best in the world is inaccurate. Unless, of course, you have some research to cite otherwise?
<br />
<br />I was just trying to present both sides of the coin here and stated that if you look there are plenty of people on here who haven't had an easy journey. I cited Victorias blog as a single current example but there are certainly others. Getting replies from newly diagnosed parents and parents of young children is hardly getting good statistical data. I didn't see anywhere in the OP that she was only looking for the good side. But I forgot, I'm in the "blow sunshine up my butt" section of the forum.

 

[CFHockeyMom]

davemn,

Way to come on here with your first post and throw accusations at me without getting to know me. Now that is irresponsible. The information I cited and later quoted is fact based and not my "point of view" and information I've posted many times. How 'bout you do your research before you join this forum, that I have been a part of for over four years, and tell me my information is person luggage and that I'm poisoning the community with lies.

Since I've had a child with CF for a bit longer than two months, maybe you could throw me a bone and respect my experience.

The OP asked a question and I didn't see anywhere in there that she was only looking for the positives. She's trying to make a difficult decision and when making a decision you need all of the facts; pros and cons.

 

[CFHockeyMom]

davemn,

Way to come on here with your first post and throw accusations at me without getting to know me. Now that is irresponsible. The information I cited and later quoted is fact based and not my "point of view" and information I've posted many times. How 'bout you do your research before you join this forum, that I have been a part of for over four years, and tell me my information is person luggage and that I'm poisoning the community with lies.

Since I've had a child with CF for a bit longer than two months, maybe you could throw me a bone and respect my experience.

The OP asked a question and I didn't see anywhere in there that she was only looking for the positives. She's trying to make a difficult decision and when making a decision you need all of the facts; pros and cons.

 

[CFHockeyMom]

davemn,

Way to come on here with your first post and throw accusations at me without getting to know me. Now that is irresponsible. The information I cited and later quoted is fact based and not my "point of view" and information I've posted many times. How 'bout you do your research before you join this forum, that I have been a part of for over four years, and tell me my information is person luggage and that I'm poisoning the community with lies.

Since I've had a child with CF for a bit longer than two months, maybe you could throw me a bone and respect my experience.

The OP asked a question and I didn't see anywhere in there that she was only looking for the positives. She's trying to make a difficult decision and when making a decision you need all of the facts; pros and cons.

 

[CFHockeyMom]

davemn,

Way to come on here with your first post and throw accusations at me without getting to know me. Now that is irresponsible. The information I cited and later quoted is fact based and not my "point of view" and information I've posted many times. How 'bout you do your research before you join this forum, that I have been a part of for over four years, and tell me my information is person luggage and that I'm poisoning the community with lies.

Since I've had a child with CF for a bit longer than two months, maybe you could throw me a bone and respect my experience.

The OP asked a question and I didn't see anywhere in there that she was only looking for the positives. She's trying to make a difficult decision and when making a decision you need all of the facts; pros and cons.

 

[CFHockeyMom]

davemn,
<br />
<br />Way to come on here with your first post and throw accusations at me without getting to know me. Now that is irresponsible. The information I cited and later quoted is fact based and not my "point of view" and information I've posted many times. How 'bout you do your research before you join this forum, that I have been a part of for over four years, and tell me my information is person luggage and that I'm poisoning the community with lies.
<br />
<br />Since I've had a child with CF for a bit longer than two months, maybe you could throw me a bone and respect my experience.
<br />
<br />The OP asked a question and I didn't see anywhere in there that she was only looking for the positives. She's trying to make a difficult decision and when making a decision you need all of the facts; pros and cons.