New to forum

Birdcarver

New member
Hi,
I am new to this forum having stumbled upon it via another forum. While looking at past posts regarding gene mutations, I noticed a post from the mother of a child with the 3659DelC mutation, which is one of mine. I have never come across another person sharing this muation, other than my brother. This child lived in Australia and I live in Canada. We both could possibly have ancestors from England(I know I do). I also carry the P67L mutation, which I have never encountered in anyone else except my brother. Research did show it amy be of Swedish origin and could contribute to chronic pancreatitis, a symptom both my brother and I share. Just interested in seeing if there is anyone on this forum that carries either of these mutations and also what their symptoms may be. I have both lung and pancreatic involvement as well as problems with DIOS. I am supposedly pancreatic sufficient, although vitamin testing shows all my fat soluble vitamin levels are low so I don't really absorb fats all that well. Also, I have osteoporosis and lately am having early CFRD type blood results. I am 48 - soon to be 49, retired because of my health and with a lung function of about 43% of predicted. Normal weight but suffer pancreatitis almost every six weeks. Looking forward to sharing with others who may share my mutations or symptoms.
Michelle
 

Birdcarver

New member
Hi,
I am new to this forum having stumbled upon it via another forum. While looking at past posts regarding gene mutations, I noticed a post from the mother of a child with the 3659DelC mutation, which is one of mine. I have never come across another person sharing this muation, other than my brother. This child lived in Australia and I live in Canada. We both could possibly have ancestors from England(I know I do). I also carry the P67L mutation, which I have never encountered in anyone else except my brother. Research did show it amy be of Swedish origin and could contribute to chronic pancreatitis, a symptom both my brother and I share. Just interested in seeing if there is anyone on this forum that carries either of these mutations and also what their symptoms may be. I have both lung and pancreatic involvement as well as problems with DIOS. I am supposedly pancreatic sufficient, although vitamin testing shows all my fat soluble vitamin levels are low so I don't really absorb fats all that well. Also, I have osteoporosis and lately am having early CFRD type blood results. I am 48 - soon to be 49, retired because of my health and with a lung function of about 43% of predicted. Normal weight but suffer pancreatitis almost every six weeks. Looking forward to sharing with others who may share my mutations or symptoms.
Michelle
 

Birdcarver

New member
Hi,
I am new to this forum having stumbled upon it via another forum. While looking at past posts regarding gene mutations, I noticed a post from the mother of a child with the 3659DelC mutation, which is one of mine. I have never come across another person sharing this muation, other than my brother. This child lived in Australia and I live in Canada. We both could possibly have ancestors from England(I know I do). I also carry the P67L mutation, which I have never encountered in anyone else except my brother. Research did show it amy be of Swedish origin and could contribute to chronic pancreatitis, a symptom both my brother and I share. Just interested in seeing if there is anyone on this forum that carries either of these mutations and also what their symptoms may be. I have both lung and pancreatic involvement as well as problems with DIOS. I am supposedly pancreatic sufficient, although vitamin testing shows all my fat soluble vitamin levels are low so I don't really absorb fats all that well. Also, I have osteoporosis and lately am having early CFRD type blood results. I am 48 - soon to be 49, retired because of my health and with a lung function of about 43% of predicted. Normal weight but suffer pancreatitis almost every six weeks. Looking forward to sharing with others who may share my mutations or symptoms.
Michelle
 

Birdcarver

New member
Hi,
I am new to this forum having stumbled upon it via another forum. While looking at past posts regarding gene mutations, I noticed a post from the mother of a child with the 3659DelC mutation, which is one of mine. I have never come across another person sharing this muation, other than my brother. This child lived in Australia and I live in Canada. We both could possibly have ancestors from England(I know I do). I also carry the P67L mutation, which I have never encountered in anyone else except my brother. Research did show it amy be of Swedish origin and could contribute to chronic pancreatitis, a symptom both my brother and I share. Just interested in seeing if there is anyone on this forum that carries either of these mutations and also what their symptoms may be. I have both lung and pancreatic involvement as well as problems with DIOS. I am supposedly pancreatic sufficient, although vitamin testing shows all my fat soluble vitamin levels are low so I don't really absorb fats all that well. Also, I have osteoporosis and lately am having early CFRD type blood results. I am 48 - soon to be 49, retired because of my health and with a lung function of about 43% of predicted. Normal weight but suffer pancreatitis almost every six weeks. Looking forward to sharing with others who may share my mutations or symptoms.
Michelle
 

Birdcarver

New member
Hi,
<br />I am new to this forum having stumbled upon it via another forum. While looking at past posts regarding gene mutations, I noticed a post from the mother of a child with the 3659DelC mutation, which is one of mine. I have never come across another person sharing this muation, other than my brother. This child lived in Australia and I live in Canada. We both could possibly have ancestors from England(I know I do). I also carry the P67L mutation, which I have never encountered in anyone else except my brother. Research did show it amy be of Swedish origin and could contribute to chronic pancreatitis, a symptom both my brother and I share. Just interested in seeing if there is anyone on this forum that carries either of these mutations and also what their symptoms may be. I have both lung and pancreatic involvement as well as problems with DIOS. I am supposedly pancreatic sufficient, although vitamin testing shows all my fat soluble vitamin levels are low so I don't really absorb fats all that well. Also, I have osteoporosis and lately am having early CFRD type blood results. I am 48 - soon to be 49, retired because of my health and with a lung function of about 43% of predicted. Normal weight but suffer pancreatitis almost every six weeks. Looking forward to sharing with others who may share my mutations or symptoms.
<br />Michelle
 

beleache

New member
Hi Michelle and welcome to the site. I only know one of my mutations (just got retyped, so will know the other one soon) and it is not one of yours..
I was dxd at the age of 44, lots of gi involvement, but lungs have caught up now.
I have osteoporosis, and may be starting to have some CFRD on set also..
I am also a normal weight (actually above)
my lung function is about 57%
Looking forward to hearing more of your story.
<img src="i/expressions/face-icon-small-smile.gif" border="0"> joni
 

beleache

New member
Hi Michelle and welcome to the site. I only know one of my mutations (just got retyped, so will know the other one soon) and it is not one of yours..
I was dxd at the age of 44, lots of gi involvement, but lungs have caught up now.
I have osteoporosis, and may be starting to have some CFRD on set also..
I am also a normal weight (actually above)
my lung function is about 57%
Looking forward to hearing more of your story.
<img src="i/expressions/face-icon-small-smile.gif" border="0"> joni
 

beleache

New member
Hi Michelle and welcome to the site. I only know one of my mutations (just got retyped, so will know the other one soon) and it is not one of yours..
I was dxd at the age of 44, lots of gi involvement, but lungs have caught up now.
I have osteoporosis, and may be starting to have some CFRD on set also..
I am also a normal weight (actually above)
my lung function is about 57%
Looking forward to hearing more of your story.
<img src="i/expressions/face-icon-small-smile.gif" border="0"> joni
 

beleache

New member
Hi Michelle and welcome to the site. I only know one of my mutations (just got retyped, so will know the other one soon) and it is not one of yours..
I was dxd at the age of 44, lots of gi involvement, but lungs have caught up now.
I have osteoporosis, and may be starting to have some CFRD on set also..
I am also a normal weight (actually above)
my lung function is about 57%
Looking forward to hearing more of your story.
<img src="i/expressions/face-icon-small-smile.gif" border="0"> joni
 

beleache

New member
Hi Michelle and welcome to the site. I only know one of my mutations (just got retyped, so will know the other one soon) and it is not one of yours..
<br />I was dxd at the age of 44, lots of gi involvement, but lungs have caught up now.
<br />I have osteoporosis, and may be starting to have some CFRD on set also..
<br />I am also a normal weight (actually above)
<br />my lung function is about 57%
<br />Looking forward to hearing more of your story.
<br /><img src="i/expressions/face-icon-small-smile.gif" border="0"> joni
<br />
 

mom2lillian

New member
Michelle

Hello, my name is Nicole, very pleased to *meet* you. I have P67L as does sunflower who you will sometimes see around. I was dx'd in early 20's you can see my blog under my stuff if you are interested.

I connected with a father of a girl just dx's with P67L last year and he has made a website for that mutation. I have sent you a PM.
 

mom2lillian

New member
Michelle

Hello, my name is Nicole, very pleased to *meet* you. I have P67L as does sunflower who you will sometimes see around. I was dx'd in early 20's you can see my blog under my stuff if you are interested.

I connected with a father of a girl just dx's with P67L last year and he has made a website for that mutation. I have sent you a PM.
 

mom2lillian

New member
Michelle

Hello, my name is Nicole, very pleased to *meet* you. I have P67L as does sunflower who you will sometimes see around. I was dx'd in early 20's you can see my blog under my stuff if you are interested.

I connected with a father of a girl just dx's with P67L last year and he has made a website for that mutation. I have sent you a PM.
 

mom2lillian

New member
Michelle

Hello, my name is Nicole, very pleased to *meet* you. I have P67L as does sunflower who you will sometimes see around. I was dx'd in early 20's you can see my blog under my stuff if you are interested.

I connected with a father of a girl just dx's with P67L last year and he has made a website for that mutation. I have sent you a PM.
 

mom2lillian

New member
Michelle
<br />
<br />Hello, my name is Nicole, very pleased to *meet* you. I have P67L as does sunflower who you will sometimes see around. I was dx'd in early 20's you can see my blog under my stuff if you are interested.
<br />
<br />I connected with a father of a girl just dx's with P67L last year and he has made a website for that mutation. I have sent you a PM.
 

sunflower

New member
Hi Michelle,

Yes welcome to the site and it is a great place to talk to people with the same condition or to find out stuff.
Anyway, I also have P67L and what I geather and was told about it-
I must have Scottish ancestors. 1.4% of Scottish CF chromosomes it effect.

I don't have any pancreas problems. I was dx's at 33yrs old. I am now 37yrs old. My Pfts are 89%

I hope things settle down for you with your pancreas. Do you have any children?. Where u only recently dx's?
Take care and talk soon. <img src="i/expressions/face-icon-small-happy.gif" border="0">

---------------------------
Sunflower
37yrs old
ABPA/Bronchies/Asthma
Cepacia (not cultured in a year)
hoping to conceive this year.
 

sunflower

New member
Hi Michelle,

Yes welcome to the site and it is a great place to talk to people with the same condition or to find out stuff.
Anyway, I also have P67L and what I geather and was told about it-
I must have Scottish ancestors. 1.4% of Scottish CF chromosomes it effect.

I don't have any pancreas problems. I was dx's at 33yrs old. I am now 37yrs old. My Pfts are 89%

I hope things settle down for you with your pancreas. Do you have any children?. Where u only recently dx's?
Take care and talk soon. <img src="i/expressions/face-icon-small-happy.gif" border="0">

---------------------------
Sunflower
37yrs old
ABPA/Bronchies/Asthma
Cepacia (not cultured in a year)
hoping to conceive this year.
 

sunflower

New member
Hi Michelle,

Yes welcome to the site and it is a great place to talk to people with the same condition or to find out stuff.
Anyway, I also have P67L and what I geather and was told about it-
I must have Scottish ancestors. 1.4% of Scottish CF chromosomes it effect.

I don't have any pancreas problems. I was dx's at 33yrs old. I am now 37yrs old. My Pfts are 89%

I hope things settle down for you with your pancreas. Do you have any children?. Where u only recently dx's?
Take care and talk soon. <img src="i/expressions/face-icon-small-happy.gif" border="0">

---------------------------
Sunflower
37yrs old
ABPA/Bronchies/Asthma
Cepacia (not cultured in a year)
hoping to conceive this year.
 

sunflower

New member
Hi Michelle,

Yes welcome to the site and it is a great place to talk to people with the same condition or to find out stuff.
Anyway, I also have P67L and what I geather and was told about it-
I must have Scottish ancestors. 1.4% of Scottish CF chromosomes it effect.

I don't have any pancreas problems. I was dx's at 33yrs old. I am now 37yrs old. My Pfts are 89%

I hope things settle down for you with your pancreas. Do you have any children?. Where u only recently dx's?
Take care and talk soon. <img src="i/expressions/face-icon-small-happy.gif" border="0">

---------------------------
Sunflower
37yrs old
ABPA/Bronchies/Asthma
Cepacia (not cultured in a year)
hoping to conceive this year.
 

sunflower

New member
Hi Michelle,
<br />
<br />Yes welcome to the site and it is a great place to talk to people with the same condition or to find out stuff.
<br />Anyway, I also have P67L and what I geather and was told about it-
<br />I must have Scottish ancestors. 1.4% of Scottish CF chromosomes it effect.
<br />
<br />I don't have any pancreas problems. I was dx's at 33yrs old. I am now 37yrs old. My Pfts are 89%
<br />
<br />I hope things settle down for you with your pancreas. Do you have any children?. Where u only recently dx's?
<br />Take care and talk soon. <img src="i/expressions/face-icon-small-happy.gif" border="0">
<br />
<br />---------------------------
<br />Sunflower
<br />37yrs old
<br />ABPA/Bronchies/Asthma
<br />Cepacia (not cultured in a year)
<br />hoping to conceive this year.
 
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