I Was a CF carrier for 29 yrs

J

JORDYSMOM

New member
Hi Laurie and welcome. I am with wuffles on this one. You don't develop CF. It happens at conception, so you have always had two CF gene mutations. Assuming that your sister had the same mutations as you, this is just further proof that no two CF patients are alike. There are even cases where identical twins with CF present very different clinical outcomes.

I'm also curious to know how you found the second mutation. Was it new symptoms or just curiousity? Remember that CF is a progressive disease. You can be symptom free for years and years, and then start to progress. I'm glad you have an appt. You will learn many ways to prevent damage to your body. Prevention is the key with this disease. My son wasn't dx until he was 15, because his symptoms were not glaringly obvious. He has mostly sinus and lung involvement with his CF. He also has an asthma component, so that masked things for doctors. Since his dx, he is much healthier. You may be surprised once you start treatment at how much better you feel. My son is healthier than he's ever been because of receiving the proper care.

I know this is a scary time for you and your mother. I'm sure she is taking it pretty hard. I would urge you and her to come to this forum, and educate yourselves as much as possible. Look at the patients here who are living very productive lives, and managing their CF. Knowledge is power, and there is much hope here.

Again, welcome, and I look forward to getting to know you.

Stacey
 
J

JORDYSMOM

New member
Hi Laurie and welcome. I am with wuffles on this one. You don't develop CF. It happens at conception, so you have always had two CF gene mutations. Assuming that your sister had the same mutations as you, this is just further proof that no two CF patients are alike. There are even cases where identical twins with CF present very different clinical outcomes.

I'm also curious to know how you found the second mutation. Was it new symptoms or just curiousity? Remember that CF is a progressive disease. You can be symptom free for years and years, and then start to progress. I'm glad you have an appt. You will learn many ways to prevent damage to your body. Prevention is the key with this disease. My son wasn't dx until he was 15, because his symptoms were not glaringly obvious. He has mostly sinus and lung involvement with his CF. He also has an asthma component, so that masked things for doctors. Since his dx, he is much healthier. You may be surprised once you start treatment at how much better you feel. My son is healthier than he's ever been because of receiving the proper care.

I know this is a scary time for you and your mother. I'm sure she is taking it pretty hard. I would urge you and her to come to this forum, and educate yourselves as much as possible. Look at the patients here who are living very productive lives, and managing their CF. Knowledge is power, and there is much hope here.

Again, welcome, and I look forward to getting to know you.

Stacey
 
J

JORDYSMOM

New member
Hi Laurie and welcome. I am with wuffles on this one. You don't develop CF. It happens at conception, so you have always had two CF gene mutations. Assuming that your sister had the same mutations as you, this is just further proof that no two CF patients are alike. There are even cases where identical twins with CF present very different clinical outcomes.

I'm also curious to know how you found the second mutation. Was it new symptoms or just curiousity? Remember that CF is a progressive disease. You can be symptom free for years and years, and then start to progress. I'm glad you have an appt. You will learn many ways to prevent damage to your body. Prevention is the key with this disease. My son wasn't dx until he was 15, because his symptoms were not glaringly obvious. He has mostly sinus and lung involvement with his CF. He also has an asthma component, so that masked things for doctors. Since his dx, he is much healthier. You may be surprised once you start treatment at how much better you feel. My son is healthier than he's ever been because of receiving the proper care.

I know this is a scary time for you and your mother. I'm sure she is taking it pretty hard. I would urge you and her to come to this forum, and educate yourselves as much as possible. Look at the patients here who are living very productive lives, and managing their CF. Knowledge is power, and there is much hope here.

Again, welcome, and I look forward to getting to know you.

Stacey
 
J

JORDYSMOM

New member
Hi Laurie and welcome. I am with wuffles on this one. You don't develop CF. It happens at conception, so you have always had two CF gene mutations. Assuming that your sister had the same mutations as you, this is just further proof that no two CF patients are alike. There are even cases where identical twins with CF present very different clinical outcomes.

I'm also curious to know how you found the second mutation. Was it new symptoms or just curiousity? Remember that CF is a progressive disease. You can be symptom free for years and years, and then start to progress. I'm glad you have an appt. You will learn many ways to prevent damage to your body. Prevention is the key with this disease. My son wasn't dx until he was 15, because his symptoms were not glaringly obvious. He has mostly sinus and lung involvement with his CF. He also has an asthma component, so that masked things for doctors. Since his dx, he is much healthier. You may be surprised once you start treatment at how much better you feel. My son is healthier than he's ever been because of receiving the proper care.

I know this is a scary time for you and your mother. I'm sure she is taking it pretty hard. I would urge you and her to come to this forum, and educate yourselves as much as possible. Look at the patients here who are living very productive lives, and managing their CF. Knowledge is power, and there is much hope here.

Again, welcome, and I look forward to getting to know you.

Stacey
 
J

JORDYSMOM

New member
Hi Laurie and welcome. I am with wuffles on this one. You don't develop CF. It happens at conception, so you have always had two CF gene mutations. Assuming that your sister had the same mutations as you, this is just further proof that no two CF patients are alike. There are even cases where identical twins with CF present very different clinical outcomes.

I'm also curious to know how you found the second mutation. Was it new symptoms or just curiousity? Remember that CF is a progressive disease. You can be symptom free for years and years, and then start to progress. I'm glad you have an appt. You will learn many ways to prevent damage to your body. Prevention is the key with this disease. My son wasn't dx until he was 15, because his symptoms were not glaringly obvious. He has mostly sinus and lung involvement with his CF. He also has an asthma component, so that masked things for doctors. Since his dx, he is much healthier. You may be surprised once you start treatment at how much better you feel. My son is healthier than he's ever been because of receiving the proper care.

I know this is a scary time for you and your mother. I'm sure she is taking it pretty hard. I would urge you and her to come to this forum, and educate yourselves as much as possible. Look at the patients here who are living very productive lives, and managing their CF. Knowledge is power, and there is much hope here.

Again, welcome, and I look forward to getting to know you.

Stacey
 
V

valigirl21

Guest
That sort of settles some issues for me so thanks. My son is diagnosed "CF w/ unknown mutation." Now I know how long I could be waiting for an answer to the mutation question. I also want to know what prompted you to get retested. I'm sorry to here about your sister. I know how that feels as my brother just passed in September. He was 26. That never goes away I don't think. Your in my prayers as everyone who fights this battle is.
 
V

valigirl21

Guest
That sort of settles some issues for me so thanks. My son is diagnosed "CF w/ unknown mutation." Now I know how long I could be waiting for an answer to the mutation question. I also want to know what prompted you to get retested. I'm sorry to here about your sister. I know how that feels as my brother just passed in September. He was 26. That never goes away I don't think. Your in my prayers as everyone who fights this battle is.
 
V

valigirl21

Guest
That sort of settles some issues for me so thanks. My son is diagnosed "CF w/ unknown mutation." Now I know how long I could be waiting for an answer to the mutation question. I also want to know what prompted you to get retested. I'm sorry to here about your sister. I know how that feels as my brother just passed in September. He was 26. That never goes away I don't think. Your in my prayers as everyone who fights this battle is.
 
V

valigirl21

Guest
That sort of settles some issues for me so thanks. My son is diagnosed "CF w/ unknown mutation." Now I know how long I could be waiting for an answer to the mutation question. I also want to know what prompted you to get retested. I'm sorry to here about your sister. I know how that feels as my brother just passed in September. He was 26. That never goes away I don't think. Your in my prayers as everyone who fights this battle is.
 
V

valigirl21

Guest
That sort of settles some issues for me so thanks. My son is diagnosed "CF w/ unknown mutation." Now I know how long I could be waiting for an answer to the mutation question. I also want to know what prompted you to get retested. I'm sorry to here about your sister. I know how that feels as my brother just passed in September. He was 26. That never goes away I don't think. Your in my prayers as everyone who fights this battle is.
 
W

welshwitch

Guest
Wow, 29 years as a "carrier" and then you get this news. So sorry to hear it. Yes, I too am curious as to what prompted you to get tested. Do you have more mild symptoms? Just another reminder of how complex CF is, and how it manifests itself in so many completely different ways. Good luck w/ your treatment! Yes, treatments have advanced amazingly in the past 30 years.
 
W

welshwitch

Guest
Wow, 29 years as a "carrier" and then you get this news. So sorry to hear it. Yes, I too am curious as to what prompted you to get tested. Do you have more mild symptoms? Just another reminder of how complex CF is, and how it manifests itself in so many completely different ways. Good luck w/ your treatment! Yes, treatments have advanced amazingly in the past 30 years.
 
W

welshwitch

Guest
Wow, 29 years as a "carrier" and then you get this news. So sorry to hear it. Yes, I too am curious as to what prompted you to get tested. Do you have more mild symptoms? Just another reminder of how complex CF is, and how it manifests itself in so many completely different ways. Good luck w/ your treatment! Yes, treatments have advanced amazingly in the past 30 years.
 
W

welshwitch

Guest
Wow, 29 years as a "carrier" and then you get this news. So sorry to hear it. Yes, I too am curious as to what prompted you to get tested. Do you have more mild symptoms? Just another reminder of how complex CF is, and how it manifests itself in so many completely different ways. Good luck w/ your treatment! Yes, treatments have advanced amazingly in the past 30 years.
 
W

welshwitch

Guest
Wow, 29 years as a "carrier" and then you get this news. So sorry to hear it. Yes, I too am curious as to what prompted you to get tested. Do you have more mild symptoms? Just another reminder of how complex CF is, and how it manifests itself in so many completely different ways. Good luck w/ your treatment! Yes, treatments have advanced amazingly in the past 30 years.
 
N

NoExcuses

New member
if your sister who passed was a whole sister, you are a fantastic example of how genes do not predict clinical outcome.

so many claim that genes reveal the secret to live expectancy and disease severity, but your example and your sisters demonstrates that so much more goes into how long a CFer will live aside from your two CF gene mutations!
 
N

NoExcuses

New member
if your sister who passed was a whole sister, you are a fantastic example of how genes do not predict clinical outcome.

so many claim that genes reveal the secret to live expectancy and disease severity, but your example and your sisters demonstrates that so much more goes into how long a CFer will live aside from your two CF gene mutations!
 
N

NoExcuses

New member
if your sister who passed was a whole sister, you are a fantastic example of how genes do not predict clinical outcome.

so many claim that genes reveal the secret to live expectancy and disease severity, but your example and your sisters demonstrates that so much more goes into how long a CFer will live aside from your two CF gene mutations!
 
N

NoExcuses

New member
if your sister who passed was a whole sister, you are a fantastic example of how genes do not predict clinical outcome.

so many claim that genes reveal the secret to live expectancy and disease severity, but your example and your sisters demonstrates that so much more goes into how long a CFer will live aside from your two CF gene mutations!
 
N

NoExcuses

New member
if your sister who passed was a whole sister, you are a fantastic example of how genes do not predict clinical outcome.

so many claim that genes reveal the secret to live expectancy and disease severity, but your example and your sisters demonstrates that so much more goes into how long a CFer will live aside from your two CF gene mutations!
 
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