Diagnosed at age 50

[kgfrompa]

I was also DX at the age of 50 i have always been very sick with Bronchitis and blebs on my lung. I have had 19 chest tubes and my energy is liminted.Welcome and i hope you find a place that gives you support and answers with us here.<br>

 

[kgfrompa]

I was also DX at the age of 50 i have always been very sick with Bronchitis and blebs on my lung. I have had 19 chest tubes and my energy is liminted.Welcome and i hope you find a place that gives you support and answers with us here.<br>

 

[hmw]

<div class="FTQUOTE"><begin quote>i have learned more from all of you than from embry. thanks for all your posts!</end quote></div>
I am glad you found us here! Genetic testing like Ambry is invaluable for accurate dx and finally helping, in many cases, to put that last piece into the puzzle to answer what has been going on all those yrs for someone who has been sick for many yrs~ but they don't offer the practical support for how to deal with it post-dx as a place like this can! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[hmw]

<div class="FTQUOTE"><begin quote>i have learned more from all of you than from embry. thanks for all your posts!</end quote>
I am glad you found us here! Genetic testing like Ambry is invaluable for accurate dx and finally helping, in many cases, to put that last piece into the puzzle to answer what has been going on all those yrs for someone who has been sick for many yrs~ but they don't offer the practical support for how to deal with it post-dx as a place like this can! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[hmw]

<div class="FTQUOTE"><begin quote>i have learned more from all of you than from embry. thanks for all your posts!</end quote>
<br />I am glad you found us here! Genetic testing like Ambry is invaluable for accurate dx and finally helping, in many cases, to put that last piece into the puzzle to answer what has been going on all those yrs for someone who has been sick for many yrs~ but they don't offer the practical support for how to deal with it post-dx as a place like this can! <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />

 

[Nahide]

Diagnosis of late ages amazes me. I have not information about this .Because, my nephew has diagnosed at 3 months. Now he is eight years old. He goes to school. His healthy looks good nowadays . His mutation is 1677delTa. Does anybody have information about this mutataion? he doesn't cough very much and has a little sputum. is this situation change in the future? must he use vest? if, when (which years old) must he use it. is there anybody using vest? in the meantime, I am from Turkey.
I wish a healthy life to everybody.

 

[Nahide]

Diagnosis of late ages amazes me. I have not information about this .Because, my nephew has diagnosed at 3 months. Now he is eight years old. He goes to school. His healthy looks good nowadays . His mutation is 1677delTa. Does anybody have information about this mutataion? he doesn't cough very much and has a little sputum. is this situation change in the future? must he use vest? if, when (which years old) must he use it. is there anybody using vest? in the meantime, I am from Turkey.
I wish a healthy life to everybody.

 

[Nahide]

Diagnosis of late ages amazes me. I have not information about this .Because, my nephew has diagnosed at 3 months. Now he is eight years old. He goes to school. His healthy looks good nowadays . His mutation is 1677delTa. Does anybody have information about this mutataion? he doesn't cough very much and has a little sputum. is this situation change in the future? must he use vest? if, when (which years old) must he use it. is there anybody using vest? in the meantime, I am from Turkey.
<br />I wish a healthy life to everybody.

 

[cowhstone]

HI LTA, Welcome to the forum and life with CF. I am 33 years old and diagnosed at age 18. I think the main reason for my late diagnosis is because I am pancreatic sufficient, meaning I do not need enzymes. Problems digesting food and maintaining weight is a huge commponent of CF, esepcially when children are diagnosed in the first year of life. Its not because of their lungs, its because of their "failure to thrive." Also, I have a rare mutation 3849+ 10kbC-T and DF508. The rare mutation is associated with mild CF (based on studies I have researched). Prehaps your mutation has the same mild element? Because of the nature of my mutation, I am "expected" to live a full life. While I was upset at my late diagnosis too, but really in some ways its a blessing. Good luck.

 

[cowhstone]

HI LTA, Welcome to the forum and life with CF. I am 33 years old and diagnosed at age 18. I think the main reason for my late diagnosis is because I am pancreatic sufficient, meaning I do not need enzymes. Problems digesting food and maintaining weight is a huge commponent of CF, esepcially when children are diagnosed in the first year of life. Its not because of their lungs, its because of their "failure to thrive." Also, I have a rare mutation 3849+ 10kbC-T and DF508. The rare mutation is associated with mild CF (based on studies I have researched). Prehaps your mutation has the same mild element? Because of the nature of my mutation, I am "expected" to live a full life. While I was upset at my late diagnosis too, but really in some ways its a blessing. Good luck.

 

[cowhstone]

HI LTA, Welcome to the forum and life with CF. I am 33 years old and diagnosed at age 18. I think the main reason for my late diagnosis is because I am pancreatic sufficient, meaning I do not need enzymes. Problems digesting food and maintaining weight is a huge commponent of CF, esepcially when children are diagnosed in the first year of life. Its not because of their lungs, its because of their "failure to thrive." Also, I have a rare mutation 3849+ 10kbC-T and DF508. The rare mutation is associated with mild CF (based on studies I have researched). Prehaps your mutation has the same mild element? Because of the nature of my mutation, I am "expected" to live a full life. While I was upset at my late diagnosis too, but really in some ways its a blessing. Good luck.

 

[hmw]

Nahide~ I'd like to invite you to tell us about your nephew on the Families forum. <img src="i/expressions/face-icon-small-smile.gif" border="0"> This is where you will find most of the parents with children with CF, and they will be able to offer advice and answer any questions you have.

We have parents of children diagnosed at all ages, from newborns all the way through the teen years, whether asymptomatic (in those cases diagnosed via newborn screening) or later on due to recurrent respiratory illness or digestive problems. In our case, my state didn't mandate newborn screen until well after Emily was diagnosed at 7.

 

[hmw]

Nahide~ I'd like to invite you to tell us about your nephew on the Families forum. <img src="i/expressions/face-icon-small-smile.gif" border="0"> This is where you will find most of the parents with children with CF, and they will be able to offer advice and answer any questions you have.

We have parents of children diagnosed at all ages, from newborns all the way through the teen years, whether asymptomatic (in those cases diagnosed via newborn screening) or later on due to recurrent respiratory illness or digestive problems. In our case, my state didn't mandate newborn screen until well after Emily was diagnosed at 7.

 

[hmw]

Nahide~ I'd like to invite you to tell us about your nephew on the Families forum. <img src="i/expressions/face-icon-small-smile.gif" border="0"> This is where you will find most of the parents with children with CF, and they will be able to offer advice and answer any questions you have.
<br />
<br />We have parents of children diagnosed at all ages, from newborns all the way through the teen years, whether asymptomatic (in those cases diagnosed via newborn screening) or later on due to recurrent respiratory illness or digestive problems. In our case, my state didn't mandate newborn screen until well after Emily was diagnosed at 7.

 

[devora]

I have successfully raised two healthy CF daughters, now 23 and 21 and the best I can tell you is to go to a CF center at least 4 times a year to work with your doctor that you like and to choose a center that has the most patients - those doctors have seen the most.  

 

[devora]

I have successfully raised two healthy CF daughters, now 23 and 21 and the best I can tell you is to go to a CF center at least 4 times a year to work with your doctor that you like and to choose a center that has the most patients - those doctors have seen the most.

 

[devora]

I have successfully raised two healthy CF daughters, now 23 and 21 and the best I can tell you is to go to a CF center at least 4 times a year to work with your doctor that you like and to choose a center that has the most patients - those doctors have seen the most.

 

[Nahide]

Hi everybody. hmw, thank you very much for your answer. I will tell you about my nephew on the families forum.I love him very much. when he needs help to me, I want to be near him every time. for this I would like learn some informations about cf. This forum look like as a good place. Thank you very much to every body for their share

 

[Nahide]

Hi everybody. hmw, thank you very much for your answer. I will tell you about my nephew on the families forum.I love him very much. when he needs help to me, I want to be near him every time. for this I would like learn some informations about cf. This forum look like as a good place. Thank you very much to every body for their share

 

[Nahide]

Hi everybody. hmw, thank you very much for your answer. I will tell you about my nephew on the families forum.I love him very much. when he needs help to me, I want to be near him every time. for this I would like learn some informations about cf. This forum look like as a good place. Thank you very much to every body for their share