F508 MUTATION

anonymous

New member
Hi I have a 9 month old daughter who was diagnosed when she was 20 days old. We recently spent two weeks in the hospital due to a lung infection still unsure of what is going to work on getting rid of this cough she has had forever. We are trying a few things right now so I hope they work. I was wondering about the delta F508, you mentioned does she have two copies or one? What does that mean and what is the difference? Does this mean the disease is more server with two or different parts of the body is affected with two? If you have any answer that would be terrific. Have a nice evening thank you, Jazzy
 

anonymous

New member
Hi I have a 9 month old daughter who was diagnosed when she was 20 days old. We recently spent two weeks in the hospital due to a lung infection still unsure of what is going to work on getting rid of this cough she has had forever. We are trying a few things right now so I hope they work. I was wondering about the delta F508, you mentioned does she have two copies or one? What does that mean and what is the difference? Does this mean the disease is more server with two or different parts of the body is affected with two? If you have any answer that would be terrific. Have a nice evening thank you, Jazzy
 

2005CFmom

Super Moderator
Jazzy,
To have CF you have to have two copies of a CF mutation. Delta F508 is the most common mutation. Some people have 2 copies of the mutation (double delta F508), some peolple have the F508 mutation & another mutation, and some people with CF don't have the F508 mutation at all but have 2 other mutations. Does that make sense?

If you only have one mutation...then you don't have CF, but you are a carrier.


Hope that helps.
 

2005CFmom

Super Moderator
Jazzy,
To have CF you have to have two copies of a CF mutation. Delta F508 is the most common mutation. Some people have 2 copies of the mutation (double delta F508), some peolple have the F508 mutation & another mutation, and some people with CF don't have the F508 mutation at all but have 2 other mutations. Does that make sense?

If you only have one mutation...then you don't have CF, but you are a carrier.


Hope that helps.
 

fourkidsmom

New member
Our son has the 2 copies of the mutation (double delta F508), he was diagnosed when I was 7 months pregnant. Just let me know if you have any questions. Angie Step mom to Brittany 14 on 2/6/06, no cfMom to Tyler 13, no cf, cf carrierMom to Brady 4 with cfMom to Taylor, 3 no cf, but chromsosome 9q 21.2 q 22.1 deletion
 

fourkidsmom

New member
Our son has the 2 copies of the mutation (double delta F508), he was diagnosed when I was 7 months pregnant. Just let me know if you have any questions. Angie Step mom to Brittany 14 on 2/6/06, no cfMom to Tyler 13, no cf, cf carrierMom to Brady 4 with cfMom to Taylor, 3 no cf, but chromsosome 9q 21.2 q 22.1 deletion
 

SFLMAN

New member
My wife had the same gene and our daughter has only one copy.I would like to give you some good news about her she was almost illness free for the first 24 years of her life she did do all of her treatments as perscribed and her mother not only had her to keep healthy but her older sister and the lived in Mexico City of all places to have CF.Her illness was in check most of her life with the usual once a year cleanups and some embolizations in her late 30s.I wish you the best and things have changed alot since she was young but be strong and do the cpt and treatments as often as you need to it is most important more so as he gets older.
 

SFLMAN

New member
My wife had the same gene and our daughter has only one copy.I would like to give you some good news about her she was almost illness free for the first 24 years of her life she did do all of her treatments as perscribed and her mother not only had her to keep healthy but her older sister and the lived in Mexico City of all places to have CF.Her illness was in check most of her life with the usual once a year cleanups and some embolizations in her late 30s.I wish you the best and things have changed alot since she was young but be strong and do the cpt and treatments as often as you need to it is most important more so as he gets older.
 

eli

New member
Hi, i have a 14month old daughter with CF. She was diagnosed at 5wks, because of a bowel blockage and has a copy of the double Delta F508.
Although she is doing fine for the time being, and we prey she continues to do well.
Please feel free to email me if you have any qustions i will be gald to answer them.

Best wishes
Eli<img src="i/expressions/angel.gif" border="0">
 

eli

New member
Hi, i have a 14month old daughter with CF. She was diagnosed at 5wks, because of a bowel blockage and has a copy of the double Delta F508.
Although she is doing fine for the time being, and we prey she continues to do well.
Please feel free to email me if you have any qustions i will be gald to answer them.

Best wishes
Eli<img src="i/expressions/angel.gif" border="0">
 

anonymous

New member
i CAN RELATE TO WHAT YOUR GOING THROUGH. I HAVE THREE CHILDREN WITH
CF.MY DAUGHTER WHO IS 9.A SON 5 AND A SON 3.

MOM OF 3 WITH CF
 

thelizardqueen

New member
I'm surprised I haven't posted in this thread. I was diagnosed at 6 weeks of age, and I'm double delta f508. I've only been hospitilized twice as a child for minor digestive issues, and have only been hospitilized twice for lung issues - once when I was 15 for plugs, and just recently now at 24 for plugs as well. Most of my issues are simply digestive, but I now have minor lung involvement. It just goes to show that you can't trust a gene mutation to tell you the outcome of severity because I'm going strong at 24 and am not even near contemplating transplant. I'm having a rough year right now - PFTs hovering around the 60s, but plan on getting them back up, and my O2 levels are always around 95-100%.
 

britles79

New member
Hello, my name is Brittany and I have a 2 month old daughter who was diagnosed at 3 weeks. She was born with a meconium ileus and that prompted doctors to test. Do you know much about the Double Delta F508 mutation? That is the one my daughter has. Does that mean the CF will be more or less severe or does it vary per patient. How is your daughter doing? Has she had many hospital stays? Does she have more digestive or pulmonary problems. About the in home day care, has she contacted many illnesses from the child care? My husband is very nervous about letting her go to child care. The lady that was going keep her keeps only 1 other child. We have decided for now, my husband is staying home with her. Not sure how long that will be considering he is not bringing home an income. Please let me know what your true feelings are about child care. If you were able, would you rather keep her home? Please write back. Thank you
 

britles79

New member
Hello, my name is Brittany and I have a 2 month old daughter who was diagnosed at 3 weeks. She was born with a meconium ileus and that prompted doctors to test. Do you know much about the Double Delta F508 mutation? That is the one my daughter has. Does that mean the CF will be more or less severe or does it vary per patient. How is your daughter doing? Has she had many hospital stays? Does she have more digestive or pulmonary problems. About the in home day care, has she contacted many illnesses from the child care? My husband is very nervous about letting her go to child care. The lady that was going keep her keeps only 1 other child. We have decided for now, my husband is staying home with her. Not sure how long that will be considering he is not bringing home an income. Please let me know what your true feelings are about child care. If you were able, would you rather keep her home? Please write back. Thank you
 

britles79

New member
Hello, my name is Brittany and I have a 2 month old daughter who was diagnosed at 3 weeks. She was born with a meconium ileus and that prompted doctors to test. Do you know much about the Double Delta F508 mutation? That is the one my daughter has. Does that mean the CF will be more or less severe or does it vary per patient. How is your daughter doing? Has she had many hospital stays? Does she have more digestive or pulmonary problems. About the in home day care, has she contacted many illnesses from the child care? My husband is very nervous about letting her go to child care. The lady that was going keep her keeps only 1 other child. We have decided for now, my husband is staying home with her. Not sure how long that will be considering he is not bringing home an income. Please let me know what your true feelings are about child care. If you were able, would you rather keep her home? Please write back. Thank you
 

sue35

New member
I have the double F508 and it is technically labeled as the most severe but that means very little. It does vary for every child. it does usually mean that we have both digestive and lung problems however. But once again, mutuations vary so much so it is virtually impossible to say for certain how bad it is. I have only had one actual hospital stay with only three PICCs (4 in a month) in my life. So that is not too bad.

In terms of day care, I would look at the other thread that mentions day care. People have very different opinions on it.
 

sue35

New member
I have the double F508 and it is technically labeled as the most severe but that means very little. It does vary for every child. it does usually mean that we have both digestive and lung problems however. But once again, mutuations vary so much so it is virtually impossible to say for certain how bad it is. I have only had one actual hospital stay with only three PICCs (4 in a month) in my life. So that is not too bad.

In terms of day care, I would look at the other thread that mentions day care. People have very different opinions on it.
 

sue35

New member
I have the double F508 and it is technically labeled as the most severe but that means very little. It does vary for every child. it does usually mean that we have both digestive and lung problems however. But once again, mutuations vary so much so it is virtually impossible to say for certain how bad it is. I have only had one actual hospital stay with only three PICCs (4 in a month) in my life. So that is not too bad.

In terms of day care, I would look at the other thread that mentions day care. People have very different opinions on it.
 

sue35

New member
Well I guess Liz has me beat with only two hospital/PICC times<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

sue35

New member
Well I guess Liz has me beat with only two hospital/PICC times<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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