F508del/R117C

G

gunelle

Guest
Hi all, I am curious to hear from people who share my mutations F508del/R117C, to see how you cope with life in general, and where you are in your life. I know that not all with the same mutations share the same symptoms, but I am curious nevertheless.

I am in my 30s, working, living with my partner in Spain. No children yet. I have a "mild" cf, meaning occasional problems with my lungs, sinusis and recently I am beginning to think I have artritish also. I do breathing excercised daily, and take medication with my nebulizer.

Hope to hear from you soon, thank. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
G

gunelle

Guest
Hi all, I am curious to hear from people who share my mutations F508del/R117C, to see how you cope with life in general, and where you are in your life. I know that not all with the same mutations share the same symptoms, but I am curious nevertheless.

I am in my 30s, working, living with my partner in Spain. No children yet. I have a "mild" cf, meaning occasional problems with my lungs, sinusis and recently I am beginning to think I have artritish also. I do breathing excercised daily, and take medication with my nebulizer.

Hope to hear from you soon, thank. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
G

gunelle

Guest
Hi all, I am curious to hear from people who share my mutations F508del/R117C, to see how you cope with life in general, and where you are in your life. I know that not all with the same mutations share the same symptoms, but I am curious nevertheless.

I am in my 30s, working, living with my partner in Spain. No children yet. I have a "mild" cf, meaning occasional problems with my lungs, sinusis and recently I am beginning to think I have artritish also. I do breathing excercised daily, and take medication with my nebulizer.

Hope to hear from you soon, thank. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
G

gunelle

Guest
Hi all, I am curious to hear from people who share my mutations F508del/R117C, to see how you cope with life in general, and where you are in your life. I know that not all with the same mutations share the same symptoms, but I am curious nevertheless.

I am in my 30s, working, living with my partner in Spain. No children yet. I have a "mild" cf, meaning occasional problems with my lungs, sinusis and recently I am beginning to think I have artritish also. I do breathing excercised daily, and take medication with my nebulizer.

Hope to hear from you soon, thank. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
G

gunelle

Guest
Hi all, I am curious to hear from people who share my mutations F508del/R117C, to see how you cope with life in general, and where you are in your life. I know that not all with the same mutations share the same symptoms, but I am curious nevertheless.
<br />
<br />I am in my 30s, working, living with my partner in Spain. No children yet. I have a "mild" cf, meaning occasional problems with my lungs, sinusis and recently I am beginning to think I have artritish also. I do breathing excercised daily, and take medication with my nebulizer.
<br />
<br />Hope to hear from you soon, thank. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

smarra

Guest
Hi,

My daughter has been diagnosed with deltaF508 and R117C. Her R117C gene has a 7T, do you know what yours is? She's only 18 months old so I can't help you out, but we are very curious of what to expect for her. She has no symptoms currently, she was only diagnosed due to a newborn screening test.

How old were you when your symptoms started and what types of problems do you have? Our doctors here are suggesting all these tests, but I'm reluctant to put her through this when she has no symptoms and she is so young.
 
S

smarra

Guest
Hi,

My daughter has been diagnosed with deltaF508 and R117C. Her R117C gene has a 7T, do you know what yours is? She's only 18 months old so I can't help you out, but we are very curious of what to expect for her. She has no symptoms currently, she was only diagnosed due to a newborn screening test.

How old were you when your symptoms started and what types of problems do you have? Our doctors here are suggesting all these tests, but I'm reluctant to put her through this when she has no symptoms and she is so young.
 
S

smarra

Guest
Hi,

My daughter has been diagnosed with deltaF508 and R117C. Her R117C gene has a 7T, do you know what yours is? She's only 18 months old so I can't help you out, but we are very curious of what to expect for her. She has no symptoms currently, she was only diagnosed due to a newborn screening test.

How old were you when your symptoms started and what types of problems do you have? Our doctors here are suggesting all these tests, but I'm reluctant to put her through this when she has no symptoms and she is so young.
 
S

smarra

Guest
Hi,

My daughter has been diagnosed with deltaF508 and R117C. Her R117C gene has a 7T, do you know what yours is? She's only 18 months old so I can't help you out, but we are very curious of what to expect for her. She has no symptoms currently, she was only diagnosed due to a newborn screening test.

How old were you when your symptoms started and what types of problems do you have? Our doctors here are suggesting all these tests, but I'm reluctant to put her through this when she has no symptoms and she is so young.
 
S

smarra

Guest
Hi,
<br />
<br />My daughter has been diagnosed with deltaF508 and R117C. Her R117C gene has a 7T, do you know what yours is? She's only 18 months old so I can't help you out, but we are very curious of what to expect for her. She has no symptoms currently, she was only diagnosed due to a newborn screening test.
<br />
<br />How old were you when your symptoms started and what types of problems do you have? Our doctors here are suggesting all these tests, but I'm reluctant to put her through this when she has no symptoms and she is so young.
 
S

saveferris2009

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



How old were you when your symptoms started and what types of problems do you have? Our doctors here are suggesting all these tests, but I'm reluctant to put her through this when she has no symptoms and she is so young.</end quote></div>

Please please please realize that the same genes don't mean the same clinical outcome.

And being PROACTIVE with this disease (doing tets and treatments BEFORE symptoms) will lead to a longer life. Please listen to your doctors.
 
S

saveferris2009

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



How old were you when your symptoms started and what types of problems do you have? Our doctors here are suggesting all these tests, but I'm reluctant to put her through this when she has no symptoms and she is so young.</end quote></div>

Please please please realize that the same genes don't mean the same clinical outcome.

And being PROACTIVE with this disease (doing tets and treatments BEFORE symptoms) will lead to a longer life. Please listen to your doctors.
 
S

saveferris2009

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



How old were you when your symptoms started and what types of problems do you have? Our doctors here are suggesting all these tests, but I'm reluctant to put her through this when she has no symptoms and she is so young.</end quote></div>

Please please please realize that the same genes don't mean the same clinical outcome.

And being PROACTIVE with this disease (doing tets and treatments BEFORE symptoms) will lead to a longer life. Please listen to your doctors.
 
S

saveferris2009

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



How old were you when your symptoms started and what types of problems do you have? Our doctors here are suggesting all these tests, but I'm reluctant to put her through this when she has no symptoms and she is so young.</end quote>

Please please please realize that the same genes don't mean the same clinical outcome.

And being PROACTIVE with this disease (doing tets and treatments BEFORE symptoms) will lead to a longer life. Please listen to your doctors.
 
S

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>smarra</b></i>
<br />
<br />
<br />
<br />How old were you when your symptoms started and what types of problems do you have? Our doctors here are suggesting all these tests, but I'm reluctant to put her through this when she has no symptoms and she is so young.</end quote>
<br />
<br />Please please please realize that the same genes don't mean the same clinical outcome.
<br />
<br />And being PROACTIVE with this disease (doing tets and treatments BEFORE symptoms) will lead to a longer life. Please listen to your doctors.
 
G

gunelle

Guest
Hi Smarra, I am not sure what my R117C gene has, I can try to look at my papers to see.

I can recomend you to have your daughter take those tests the doctor is recomending, because sooner or later, your daughter will begin to show symptons of the illness. And I think it's better for her to be on treatment in order to be protected against the bugs and mucus, rather than cure them when they arrive (if that makes sense?).

I have written a blog about my CF story, which you can read if you are interested, where I explain my course with the illness. <a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/index.cfm
">http://blogs.cysticfibrosis.com/index.cfm
</a>
My CF really broke out when I was around 30. But I have been sick all my life. I just didn't know what it was. I have had pneumonias and sinus infections as a child and as an adult.

My symptoms are mainly sinuses and "mild" lung issues.

So, bottom line, I recomend that your daughter gets treatment, because CF is progressive, and sooner or later, she will show signs of CF.

Take care.

G.
 
G

gunelle

Guest
Hi Smarra, I am not sure what my R117C gene has, I can try to look at my papers to see.

I can recomend you to have your daughter take those tests the doctor is recomending, because sooner or later, your daughter will begin to show symptons of the illness. And I think it's better for her to be on treatment in order to be protected against the bugs and mucus, rather than cure them when they arrive (if that makes sense?).

I have written a blog about my CF story, which you can read if you are interested, where I explain my course with the illness. <a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/index.cfm
">http://blogs.cysticfibrosis.com/index.cfm
</a>
My CF really broke out when I was around 30. But I have been sick all my life. I just didn't know what it was. I have had pneumonias and sinus infections as a child and as an adult.

My symptoms are mainly sinuses and "mild" lung issues.

So, bottom line, I recomend that your daughter gets treatment, because CF is progressive, and sooner or later, she will show signs of CF.

Take care.

G.
 
G

gunelle

Guest
Hi Smarra, I am not sure what my R117C gene has, I can try to look at my papers to see.

I can recomend you to have your daughter take those tests the doctor is recomending, because sooner or later, your daughter will begin to show symptons of the illness. And I think it's better for her to be on treatment in order to be protected against the bugs and mucus, rather than cure them when they arrive (if that makes sense?).

I have written a blog about my CF story, which you can read if you are interested, where I explain my course with the illness. <a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/index.cfm
">http://blogs.cysticfibrosis.com/index.cfm
</a>
My CF really broke out when I was around 30. But I have been sick all my life. I just didn't know what it was. I have had pneumonias and sinus infections as a child and as an adult.

My symptoms are mainly sinuses and "mild" lung issues.

So, bottom line, I recomend that your daughter gets treatment, because CF is progressive, and sooner or later, she will show signs of CF.

Take care.

G.
 
G

gunelle

Guest
Hi Smarra, I am not sure what my R117C gene has, I can try to look at my papers to see.

I can recomend you to have your daughter take those tests the doctor is recomending, because sooner or later, your daughter will begin to show symptons of the illness. And I think it's better for her to be on treatment in order to be protected against the bugs and mucus, rather than cure them when they arrive (if that makes sense?).

I have written a blog about my CF story, which you can read if you are interested, where I explain my course with the illness. <a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/index.cfm
">http://blogs.cysticfibrosis.com/index.cfm
</a>
My CF really broke out when I was around 30. But I have been sick all my life. I just didn't know what it was. I have had pneumonias and sinus infections as a child and as an adult.

My symptoms are mainly sinuses and "mild" lung issues.

So, bottom line, I recomend that your daughter gets treatment, because CF is progressive, and sooner or later, she will show signs of CF.

Take care.

G.
 
G

gunelle

Guest
Hi Smarra, I am not sure what my R117C gene has, I can try to look at my papers to see.
<br />
<br />I can recomend you to have your daughter take those tests the doctor is recomending, because sooner or later, your daughter will begin to show symptons of the illness. And I think it's better for her to be on treatment in order to be protected against the bugs and mucus, rather than cure them when they arrive (if that makes sense?).
<br />
<br />I have written a blog about my CF story, which you can read if you are interested, where I explain my course with the illness. <a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/index.cfm
">http://blogs.cysticfibrosis.com/index.cfm
</a><br />
<br />My CF really broke out when I was around 30. But I have been sick all my life. I just didn't know what it was. I have had pneumonias and sinus infections as a child and as an adult.
<br />
<br />My symptoms are mainly sinuses and "mild" lung issues.
<br />
<br />So, bottom line, I recomend that your daughter gets treatment, because CF is progressive, and sooner or later, she will show signs of CF.
<br />
<br />Take care.
<br />
<br />G.
 
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