DDF508

[kfw1963]

Nancy, I also am DDF508. I am 45 and in good health for the most part. As everyone here has said, the mutations only play a certain part of how your child will do. There are so many unknowns as to why the same mutations result in drastically different outcomes. For now, I would say to not worry so much about the mutations but work with your doctors to get a treatment plan in place to maximize the benefits to your daughter. Your daughter is lucky as there is so much more knowledge regarding treatments and new drugs in the pipeline that she more than likely will be able to lead a very long and normal life.

 

[kfw1963]

Nancy, I also am DDF508. I am 45 and in good health for the most part. As everyone here has said, the mutations only play a certain part of how your child will do. There are so many unknowns as to why the same mutations result in drastically different outcomes. For now, I would say to not worry so much about the mutations but work with your doctors to get a treatment plan in place to maximize the benefits to your daughter. Your daughter is lucky as there is so much more knowledge regarding treatments and new drugs in the pipeline that she more than likely will be able to lead a very long and normal life.

 

[kfw1963]

Nancy, I also am DDF508. I am 45 and in good health for the most part. As everyone here has said, the mutations only play a certain part of how your child will do. There are so many unknowns as to why the same mutations result in drastically different outcomes. For now, I would say to not worry so much about the mutations but work with your doctors to get a treatment plan in place to maximize the benefits to your daughter. Your daughter is lucky as there is so much more knowledge regarding treatments and new drugs in the pipeline that she more than likely will be able to lead a very long and normal life.

 

[kfw1963]

Nancy, I also am DDF508. I am 45 and in good health for the most part. As everyone here has said, the mutations only play a certain part of how your child will do. There are so many unknowns as to why the same mutations result in drastically different outcomes. For now, I would say to not worry so much about the mutations but work with your doctors to get a treatment plan in place to maximize the benefits to your daughter. Your daughter is lucky as there is so much more knowledge regarding treatments and new drugs in the pipeline that she more than likely will be able to lead a very long and normal life.

 

[kfw1963]

Nancy, I also am DDF508. I am 45 and in good health for the most part. As everyone here has said, the mutations only play a certain part of how your child will do. There are so many unknowns as to why the same mutations result in drastically different outcomes. For now, I would say to not worry so much about the mutations but work with your doctors to get a treatment plan in place to maximize the benefits to your daughter. Your daughter is lucky as there is so much more knowledge regarding treatments and new drugs in the pipeline that she more than likely will be able to lead a very long and normal life.

 

[grassisgreener]

Hi Nancy, I definately feel like there is so much hope for Maggie and so many others wcf. There are many people with DDF508 that are living past the median age of survival right now and that is without a lifetime of the medications that have only been available for the past 10 years or even less. There are also some very promising medications in the research pipeline right now. Those medications will make a huge difference for people with cf, especially the young ones who can start benefitting from them at a young age. I think we can all understand how hopeless you can feel as a parent when your tiny precious one gets diagnosed with CF but please know that there is definately HOPE. Hang in there!

 

[grassisgreener]

Hi Nancy, I definately feel like there is so much hope for Maggie and so many others wcf. There are many people with DDF508 that are living past the median age of survival right now and that is without a lifetime of the medications that have only been available for the past 10 years or even less. There are also some very promising medications in the research pipeline right now. Those medications will make a huge difference for people with cf, especially the young ones who can start benefitting from them at a young age. I think we can all understand how hopeless you can feel as a parent when your tiny precious one gets diagnosed with CF but please know that there is definately HOPE. Hang in there!

 

[grassisgreener]

Hi Nancy, I definately feel like there is so much hope for Maggie and so many others wcf. There are many people with DDF508 that are living past the median age of survival right now and that is without a lifetime of the medications that have only been available for the past 10 years or even less. There are also some very promising medications in the research pipeline right now. Those medications will make a huge difference for people with cf, especially the young ones who can start benefitting from them at a young age. I think we can all understand how hopeless you can feel as a parent when your tiny precious one gets diagnosed with CF but please know that there is definately HOPE. Hang in there!

 

[grassisgreener]

Hi Nancy, I definately feel like there is so much hope for Maggie and so many others wcf. There are many people with DDF508 that are living past the median age of survival right now and that is without a lifetime of the medications that have only been available for the past 10 years or even less. There are also some very promising medications in the research pipeline right now. Those medications will make a huge difference for people with cf, especially the young ones who can start benefitting from them at a young age. I think we can all understand how hopeless you can feel as a parent when your tiny precious one gets diagnosed with CF but please know that there is definately HOPE. Hang in there!

 

[grassisgreener]

Hi Nancy, I definately feel like there is so much hope for Maggie and so many others wcf. There are many people with DDF508 that are living past the median age of survival right now and that is without a lifetime of the medications that have only been available for the past 10 years or even less. There are also some very promising medications in the research pipeline right now. Those medications will make a huge difference for people with cf, especially the young ones who can start benefitting from them at a young age. I think we can all understand how hopeless you can feel as a parent when your tiny precious one gets diagnosed with CF but please know that there is definately HOPE. Hang in there!

 

[Sheridan]

Nancy, my two boys are double DF508 and are as different as peas in a pod CF wise. My oldest is regard as mild having only the one tuneup when he was 5 and has not been sick since (3.5 years). My youngest is now considered a chronic case with visable lung damage 3 tunes up already a port-a-cath in place now and he is only 17 months.

Maggie's CF will likely to be unique to her so please don't get to caught up on ready just the negative things about a certain geneotype.

 

[Sheridan]

Nancy, my two boys are double DF508 and are as different as peas in a pod CF wise. My oldest is regard as mild having only the one tuneup when he was 5 and has not been sick since (3.5 years). My youngest is now considered a chronic case with visable lung damage 3 tunes up already a port-a-cath in place now and he is only 17 months.

Maggie's CF will likely to be unique to her so please don't get to caught up on ready just the negative things about a certain geneotype.

 

[Sheridan]

Nancy, my two boys are double DF508 and are as different as peas in a pod CF wise. My oldest is regard as mild having only the one tuneup when he was 5 and has not been sick since (3.5 years). My youngest is now considered a chronic case with visable lung damage 3 tunes up already a port-a-cath in place now and he is only 17 months.

Maggie's CF will likely to be unique to her so please don't get to caught up on ready just the negative things about a certain geneotype.

 

[Sheridan]

Nancy, my two boys are double DF508 and are as different as peas in a pod CF wise. My oldest is regard as mild having only the one tuneup when he was 5 and has not been sick since (3.5 years). My youngest is now considered a chronic case with visable lung damage 3 tunes up already a port-a-cath in place now and he is only 17 months.

Maggie's CF will likely to be unique to her so please don't get to caught up on ready just the negative things about a certain geneotype.

 

[Sheridan]

Nancy, my two boys are double DF508 and are as different as peas in a pod CF wise. My oldest is regard as mild having only the one tuneup when he was 5 and has not been sick since (3.5 years). My youngest is now considered a chronic case with visable lung damage 3 tunes up already a port-a-cath in place now and he is only 17 months.
<br />
<br />Maggie's CF will likely to be unique to her so please don't get to caught up on ready just the negative things about a certain geneotype.

 

[mneville]

My Aidan is also DDF508 and he is doing well at age 4. His major issue is sinus disease. I will also tell you that honestly the easiest part of our day is when Aidan is doing his nebs and VEST. He enjoys it and will sit for an hour everyday to do it. It is so normal to him- he tells all his friends and teachers at preschool about it. Just another little part of his day to keep him healthy..

When Aidan was 18 months old, we took him to Minnesota to see DR Warwick- regarded as one of the best who has since retired. He told us something that I will not forget.CF in itself is NOT a disease. It is two genes that cause genetic predisposition to several diseases such as lung disease, malnutrition, diabetes ect....He told us that we now have the advantage of knowing Aidan has these mutations so we can treat him before the 'diseases' kick in. I try to remember that on my dark CF days. Love your baby. It took me so long to get over the CF diagnosis- you need to give yourself alot of time...It's so new right now.

Megan, mom to Aidan 4 with CF and Gavin, 19 months NO CF

 

[mneville]

My Aidan is also DDF508 and he is doing well at age 4. His major issue is sinus disease. I will also tell you that honestly the easiest part of our day is when Aidan is doing his nebs and VEST. He enjoys it and will sit for an hour everyday to do it. It is so normal to him- he tells all his friends and teachers at preschool about it. Just another little part of his day to keep him healthy..

When Aidan was 18 months old, we took him to Minnesota to see DR Warwick- regarded as one of the best who has since retired. He told us something that I will not forget.CF in itself is NOT a disease. It is two genes that cause genetic predisposition to several diseases such as lung disease, malnutrition, diabetes ect....He told us that we now have the advantage of knowing Aidan has these mutations so we can treat him before the 'diseases' kick in. I try to remember that on my dark CF days. Love your baby. It took me so long to get over the CF diagnosis- you need to give yourself alot of time...It's so new right now.

Megan, mom to Aidan 4 with CF and Gavin, 19 months NO CF

 

[mneville]

My Aidan is also DDF508 and he is doing well at age 4. His major issue is sinus disease. I will also tell you that honestly the easiest part of our day is when Aidan is doing his nebs and VEST. He enjoys it and will sit for an hour everyday to do it. It is so normal to him- he tells all his friends and teachers at preschool about it. Just another little part of his day to keep him healthy..

When Aidan was 18 months old, we took him to Minnesota to see DR Warwick- regarded as one of the best who has since retired. He told us something that I will not forget.CF in itself is NOT a disease. It is two genes that cause genetic predisposition to several diseases such as lung disease, malnutrition, diabetes ect....He told us that we now have the advantage of knowing Aidan has these mutations so we can treat him before the 'diseases' kick in. I try to remember that on my dark CF days. Love your baby. It took me so long to get over the CF diagnosis- you need to give yourself alot of time...It's so new right now.

Megan, mom to Aidan 4 with CF and Gavin, 19 months NO CF

 

[mneville]

My Aidan is also DDF508 and he is doing well at age 4. His major issue is sinus disease. I will also tell you that honestly the easiest part of our day is when Aidan is doing his nebs and VEST. He enjoys it and will sit for an hour everyday to do it. It is so normal to him- he tells all his friends and teachers at preschool about it. Just another little part of his day to keep him healthy..

When Aidan was 18 months old, we took him to Minnesota to see DR Warwick- regarded as one of the best who has since retired. He told us something that I will not forget.CF in itself is NOT a disease. It is two genes that cause genetic predisposition to several diseases such as lung disease, malnutrition, diabetes ect....He told us that we now have the advantage of knowing Aidan has these mutations so we can treat him before the 'diseases' kick in. I try to remember that on my dark CF days. Love your baby. It took me so long to get over the CF diagnosis- you need to give yourself alot of time...It's so new right now.

Megan, mom to Aidan 4 with CF and Gavin, 19 months NO CF

 

[mneville]

My Aidan is also DDF508 and he is doing well at age 4. His major issue is sinus disease. I will also tell you that honestly the easiest part of our day is when Aidan is doing his nebs and VEST. He enjoys it and will sit for an hour everyday to do it. It is so normal to him- he tells all his friends and teachers at preschool about it. Just another little part of his day to keep him healthy..
<br />
<br />When Aidan was 18 months old, we took him to Minnesota to see DR Warwick- regarded as one of the best who has since retired. He told us something that I will not forget.CF in itself is NOT a disease. It is two genes that cause genetic predisposition to several diseases such as lung disease, malnutrition, diabetes ect....He told us that we now have the advantage of knowing Aidan has these mutations so we can treat him before the 'diseases' kick in. I try to remember that on my dark CF days. Love your baby. It took me so long to get over the CF diagnosis- you need to give yourself alot of time...It's so new right now.
<br />
<br />Megan, mom to Aidan 4 with CF and Gavin, 19 months NO CF