when your child finds out the median age

dasjsmum · Sep 23, 2011

I didnt ever tell any of my kids that they might live til (5, 13, teenage, 30 - these are the life expectancy changes since my first was diagnosed 31.5 years ago), but what I did tell them at an appropriate time and age is that CF CAN make some people very sick, and some people die from it.
 
 My kids didnt grow up with a dark cloud over their lives, they grew up with hope that they would have a normal life. They are currently aged 32, 30, 15 & 13 (non cf). All of them are really well. My daughter (30 almost) has a child who is 18 mths old and just ran in a 14 k marathon (1hr 38m).
 
 My oldest is on the open lable Vertex 770 and has been in the trial for the last couple of years. He hasnt been sick at all since starting, takes no Creon and has not even had a cold since starting the 770. His FEV1 rose from 69% to somewhere over 85%.
 
 My point is (and I also think the above posters) that every person with CF is different, no one knows the future. There are some incredibily exciting drugs almost on the market RIGHT NOW that are already changing people's lives.
 
 Dont weigh your child down with some age expectancy, make sure they understand that they need to work hard at keeping fit and looking after themselves.

Iamqueenofeverything · Sep 24, 2011

Found out when I was 3 months old and the life span was 13. now i am 31! Just was born to enjoy life every day . Prayers and my focus on God has really helped me. It helps to have a positive environment and lots of love and support. focusing on good things also helps.

Iamqueenofeverything · Sep 24, 2011

Found out when I was 3 months old and the life span was 13. now i am 31! Just was born to enjoy life every day . Prayers and my focus on God has really helped me. It helps to have a positive environment and lots of love and support. focusing on good things also helps.

Iamqueenofeverything · Sep 24, 2011

Found out when I was 3 months old and the life span was 13. now i am 31! Just was born to enjoy life every day . Prayers and my focus on God has really helped me. It helps to have a positive environment and lots of love and support. focusing on good things also helps.

rubyroselee · Sep 24, 2011

I remember I found out the median life expectancy when I was in middle school (about age 12). I was at my friends house reading through her encyclopedias in her room, and for some reason I decided to look up CF. Her encyclopedias were a little old, but not incredibly out of date. It said the life expectancy was 18. That is when I sort of realized that CF was more serious than I thought. But it really didn't stop me from living my life the same or acting any different, and I think that is because my parents always told me that everyone is different. So I always knew in the back of my head that the numbers aren't true for everyone and it doesn't mean you will die at a certain age. But I think every kid taks it differently when they find out. I think it is important to stress that not everyone is the same with this disease, so it really doesn't matter what the statistics say.

rubyroselee · Sep 24, 2011

I remember I found out the median life expectancy when I was in middle school (about age 12). I was at my friends house reading through her encyclopedias in her room, and for some reason I decided to look up CF. Her encyclopedias were a little old, but not incredibly out of date. It said the life expectancy was 18. That is when I sort of realized that CF was more serious than I thought. But it really didn't stop me from living my life the same or acting any different, and I think that is because my parents always told me that everyone is different. So I always knew in the back of my head that the numbers aren't true for everyone and it doesn't mean you will die at a certain age. But I think every kid taks it differently when they find out. I think it is important to stress that not everyone is the same with this disease, so it really doesn't matter what the statistics say.

rubyroselee · Sep 24, 2011

I remember I found out the median life expectancy when I was in middle school (about age 12). I was at my friends house reading through her encyclopedias in her room, and for some reason I decided to look up CF. Her encyclopedias were a little old, but not incredibly out of date. It said the life expectancy was 18. That is when I sort of realized that CF was more serious than I thought. But it really didn't stop me from living my life the same or acting any different, and I think that is because my parents always told me that everyone is different. So I always knew in the back of my head that the numbers aren't true for everyone and it doesn't mean you will die at a certain age. But I think every kid taks it differently when they find out. I think it is important to stress that not everyone is the same with this disease, so it really doesn't matter what the statistics say.

welshwitch · Sep 24, 2011

God, this is such a tough one! I agree what everyone else said re: the above posters--everyone is different, every kid handles the news differently. I will say I did not take it as well as I wish I had, but my experience finding out was not exactly ideal!

As a young child, I knew I had CF and knew it was permanent, but I didn't really develop the fear about it until I started to understand the concept of a reduced lifespan. When other children starting coming up to me and saying, "You have a disease and you're going to die young." When I came home crying to my mom, she said, "Don't worry you are going to grow up to be an old lady." Needless to say, I was getting very mixed messages.

When I read about CF in an (probably outdated) encyclopedia, that was it. I kind of shut down about my CF. As I hit adolesence, I realized that this was a very bad thing that I had. I started hiding taking my pills, hiding my nebulizer in a cabinet, and basically not wanting to learn about it any more. It was too painful. It wasn't until my early 20s that I felt ready to learn more.

I kind of wish my parents had handled it differently. But in my family my parents were not very good about emotional stuff. This isn't really their fault, I am sure they tried to handle my CF in the best way they could. But the messages I kept getting about it were too confusing, too painful, so eventually we all just sort of stopped talking about it. Denial set in in a major way.

(NOTE: In contrast to my emotional state, CF had and still has not hit me very hard physically).

By this point the internet was available, and I read all sorts of scary things. But I needed to know the truth. What was really going on with this strange and scary disease that no one in my family was able to talk about. So I started really eduating myself, and really engaging in my health. In this, I started to really learn about the disease, all the different variations of it, the good stories, the bad stories. I stopped being convinced I was going to die tomorrow. I started getting that fear is completely unproductive. I went to a counselor and was able to sort out these fears.

Now I'm almost 32 and really not afraid anymore. It still isn't my favorite topic with my family, but my friends and boyfriend are incredibly supportive. I have some ways to go in my acceptance of CF, but I am in a way better place with it. I don't know the "right" answer as far as telling your kid the median age, but I think what's important to take away fromt his is evreyone is different and everyone handles it in a different way. Sounds like you are being really proactive right now and I applaud you for it!

welshwitch · Sep 24, 2011

God, this is such a tough one! I agree what everyone else said re: the above posters--everyone is different, every kid handles the news differently. I will say I did not take it as well as I wish I had, but my experience finding out was not exactly ideal!

As a young child, I knew I had CF and knew it was permanent, but I didn't really develop the fear about it until I started to understand the concept of a reduced lifespan. When other children starting coming up to me and saying, "You have a disease and you're going to die young." When I came home crying to my mom, she said, "Don't worry you are going to grow up to be an old lady." Needless to say, I was getting very mixed messages.

When I read about CF in an (probably outdated) encyclopedia, that was it. I kind of shut down about my CF. As I hit adolesence, I realized that this was a very bad thing that I had. I started hiding taking my pills, hiding my nebulizer in a cabinet, and basically not wanting to learn about it any more. It was too painful. It wasn't until my early 20s that I felt ready to learn more.

I kind of wish my parents had handled it differently. But in my family my parents were not very good about emotional stuff. This isn't really their fault, I am sure they tried to handle my CF in the best way they could. But the messages I kept getting about it were too confusing, too painful, so eventually we all just sort of stopped talking about it. Denial set in in a major way.

(NOTE: In contrast to my emotional state, CF had and still has not hit me very hard physically).

By this point the internet was available, and I read all sorts of scary things. But I needed to know the truth. What was really going on with this strange and scary disease that no one in my family was able to talk about. So I started really eduating myself, and really engaging in my health. In this, I started to really learn about the disease, all the different variations of it, the good stories, the bad stories. I stopped being convinced I was going to die tomorrow. I started getting that fear is completely unproductive. I went to a counselor and was able to sort out these fears.

Now I'm almost 32 and really not afraid anymore. It still isn't my favorite topic with my family, but my friends and boyfriend are incredibly supportive. I have some ways to go in my acceptance of CF, but I am in a way better place with it. I don't know the "right" answer as far as telling your kid the median age, but I think what's important to take away fromt his is evreyone is different and everyone handles it in a different way. Sounds like you are being really proactive right now and I applaud you for it!

welshwitch · Sep 24, 2011

God, this is such a tough one! I agree what everyone else said re: the above posters--everyone is different, every kid handles the news differently. I will say I did not take it as well as I wish I had, but my experience finding out was not exactly ideal!
 
 As a young child, I knew I had CF and knew it was permanent, but I didn't really develop the fear about it until I started to understand the concept of a reduced lifespan. When other children starting coming up to me and saying, "You have a disease and you're going to die young." When I came home crying to my mom, she said, "Don't worry you are going to grow up to be an old lady." Needless to say, I was getting very mixed messages.
 
 When I read about CF in an (probably outdated) encyclopedia, that was it. I kind of shut down about my CF. As I hit adolesence, I realized that this was a very bad thing that I had. I started hiding taking my pills, hiding my nebulizer in a cabinet, and basically not wanting to learn about it any more. It was too painful. It wasn't until my early 20s that I felt ready to learn more.
 
 I kind of wish my parents had handled it differently. But in my family my parents were not very good about emotional stuff. This isn't really their fault, I am sure they tried to handle my CF in the best way they could. But the messages I kept getting about it were too confusing, too painful, so eventually we all just sort of stopped talking about it. Denial set in in a major way.
 
 (NOTE: In contrast to my emotional state, CF had and still has not hit me very hard physically).
 
 By this point the internet was available, and I read all sorts of scary things. But I needed to know the truth. What was really going on with this strange and scary disease that no one in my family was able to talk about. So I started really eduating myself, and really engaging in my health. In this, I started to really learn about the disease, all the different variations of it, the good stories, the bad stories. I stopped being convinced I was going to die tomorrow. I started getting that fear is completely unproductive. I went to a counselor and was able to sort out these fears.
 
 Now I'm almost 32 and really not afraid anymore. It still isn't my favorite topic with my family, but my friends and boyfriend are incredibly supportive. I have some ways to go in my acceptance of CF, but I am in a way better place with it. I don't know the "right" answer as far as telling your kid the median age, but I think what's important to take away fromt his is evreyone is different and everyone handles it in a different way. Sounds like you are being really proactive right now and I applaud you for it!

Jana · Sep 24, 2011

Honestly, I don't remember a time when I didn't understand that cf would ultimately take my life. My parents were always open about the fact that cf is a serious disease, but we didn't dwell on it. I was simply always taught to trust God with my life or death, and my parents lived out that faith in the way they handled it as well. Personally, I think that's the easiest way since there was no point where I had a shattering realization.

In my middle school years I began to have a better grasp of what it all really meant and began to want to talk about it. Although I'm sure it was difficult for my parents to have to deal with my need to talk it through, they listened, guided, and helped. I can honestly say that in those years I came to an acceptance and peace about it and haven't struggled with that aspect again. It's in God's hands.

Jana · Sep 24, 2011

Honestly, I don't remember a time when I didn't understand that cf would ultimately take my life. My parents were always open about the fact that cf is a serious disease, but we didn't dwell on it. I was simply always taught to trust God with my life or death, and my parents lived out that faith in the way they handled it as well. Personally, I think that's the easiest way since there was no point where I had a shattering realization.

In my middle school years I began to have a better grasp of what it all really meant and began to want to talk about it. Although I'm sure it was difficult for my parents to have to deal with my need to talk it through, they listened, guided, and helped. I can honestly say that in those years I came to an acceptance and peace about it and haven't struggled with that aspect again. It's in God's hands.

Jana · Sep 24, 2011

Honestly, I don't remember a time when I didn't understand that cf would ultimately take my life. My parents were always open about the fact that cf is a serious disease, but we didn't dwell on it. I was simply always taught to trust God with my life or death, and my parents lived out that faith in the way they handled it as well. Personally, I think that's the easiest way since there was no point where I had a shattering realization.
 
 In my middle school years I began to have a better grasp of what it all really meant and began to want to talk about it. Although I'm sure it was difficult for my parents to have to deal with my need to talk it through, they listened, guided, and helped. I can honestly say that in those years I came to an acceptance and peace about it and haven't struggled with that aspect again. It's in God's hands.

beautifulsoul · Sep 24, 2011

The majority posting on this topic now sounds like the age is 12-13. That's also when I started realizing how serious CF really is. It makes sense though, since that's when or around the teenage stage begins. Pretty similar to what Jana said, I can't exactly pin point a time when I got a good reality grasp about the seriousness of CF. Sure, I hated breathing treatments, vitamins, med's and enzymes. I fought with my parents trying to get off the hook with treatments especially but, that never worked and they still made me do them. I continued doing everything I was advised to do. My parents tried to let me live my life as normally as any other kid my age. I danced, I played soccer, I was in school plays. I think they handled it well. In my personal opinion, I agree with things to a certain degree but, you can't put your kid in a plastic bubble. I don't think my parents told me how serious CF is because maybe it would scare me and effect my way of thinking and acting and I agree. They just wanted me to be happy and enjoy life. I eventually figured out CF for myself. Therefore, again in my opinion I would consider not telling her right now. CF effects everyone differently and in such a wide range of issues. If she's healthy and continues to do everything that is asked, I don't see why parents should explain further.

Hugs to you

beautifulsoul · Sep 24, 2011

The majority posting on this topic now sounds like the age is 12-13. That's also when I started realizing how serious CF really is. It makes sense though, since that's when or around the teenage stage begins. Pretty similar to what Jana said, I can't exactly pin point a time when I got a good reality grasp about the seriousness of CF. Sure, I hated breathing treatments, vitamins, med's and enzymes. I fought with my parents trying to get off the hook with treatments especially but, that never worked and they still made me do them. I continued doing everything I was advised to do. My parents tried to let me live my life as normally as any other kid my age. I danced, I played soccer, I was in school plays. I think they handled it well. In my personal opinion, I agree with things to a certain degree but, you can't put your kid in a plastic bubble. I don't think my parents told me how serious CF is because maybe it would scare me and effect my way of thinking and acting and I agree. They just wanted me to be happy and enjoy life. I eventually figured out CF for myself. Therefore, again in my opinion I would consider not telling her right now. CF effects everyone differently and in such a wide range of issues. If she's healthy and continues to do everything that is asked, I don't see why parents should explain further.

Hugs to you

beautifulsoul · Sep 24, 2011

The majority posting on this topic now sounds like the age is 12-13. That's also when I started realizing how serious CF really is. It makes sense though, since that's when or around the teenage stage begins. Pretty similar to what Jana said, I can't exactly pin point a time when I got a good reality grasp about the seriousness of CF. Sure, I hated breathing treatments, vitamins, med's and enzymes. I fought with my parents trying to get off the hook with treatments especially but, that never worked and they still made me do them. I continued doing everything I was advised to do. My parents tried to let me live my life as normally as any other kid my age. I danced, I played soccer, I was in school plays. I think they handled it well. In my personal opinion, I agree with things to a certain degree but, you can't put your kid in a plastic bubble. I don't think my parents told me how serious CF is because maybe it would scare me and effect my way of thinking and acting and I agree. They just wanted me to be happy and enjoy life. I eventually figured out CF for myself. Therefore, again in my opinion I would consider not telling her right now. CF effects everyone differently and in such a wide range of issues. If she's healthy and continues to do everything that is asked, I don't see why parents should explain further.
 
 Hugs to you

jamest · Sep 24, 2011

I think my parents sat me down at age 8 or so to have a 'very serious talk'. That is, they were very serious, I was just an 8 year old. Anyway, they told me that my uncle had CF, and he died when he was 20. It didn't phase me.

It was only when I hit 18 or so that I really started to think about it. One thing that helped me was to consider that in the 1940s (or whenever), the median survival age was something like 3 or 4. By the time my uncle died in the 70s, it was up into the teens or twenties. And by the time I came around, it was even higher. So I could see a clear progression that indicated my odds of survival were greater.

jamest · Sep 24, 2011

I think my parents sat me down at age 8 or so to have a 'very serious talk'. That is, they were very serious, I was just an 8 year old. Anyway, they told me that my uncle had CF, and he died when he was 20. It didn't phase me.

It was only when I hit 18 or so that I really started to think about it. One thing that helped me was to consider that in the 1940s (or whenever), the median survival age was something like 3 or 4. By the time my uncle died in the 70s, it was up into the teens or twenties. And by the time I came around, it was even higher. So I could see a clear progression that indicated my odds of survival were greater.

jamest · Sep 24, 2011

I think my parents sat me down at age 8 or so to have a 'very serious talk'. That is, they were very serious, I was just an 8 year old. Anyway, they told me that my uncle had CF, and he died when he was 20. It didn't phase me.
 
 It was only when I hit 18 or so that I really started to think about it. One thing that helped me was to consider that in the 1940s (or whenever), the median survival age was something like 3 or 4. By the time my uncle died in the 70s, it was up into the teens or twenties. And by the time I came around, it was even higher. So I could see a clear progression that indicated my odds of survival were greater.

windex125 · Sep 24, 2011

My parents did not tell me either, they said I had a small problem with my lungs which casued the constant coughing, I actually remember going to 5th grade grad. holding tissues just in case. It was not till I was a adult and out on my own that I got care at a CF center. My own thoughts are not to say anything now so many children are affected by this stamp on the head and so many of us live past the age... of what is recorded as we are all different in our diesease. I say hold off. Pat/56 CF

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