On the cff it says median age of 37. The median would be if they took the ages of everyone that died with cf and wrote them down from oldest to youngest and halfway down drew a line. That would mean half died before 37 and half lived longer. Obviously many of those could have died before treatments advanced like they have, so the age at the median line should be getting older as time goes on. That's why they say that a few decades ago most died before the age of ten.
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12 year old just diagnosed
- Thread starter Sunny9432
- Start date
"Median survival is a statistic that refers to how long patients survive with a disease in general or after a certain treatment. It is the time -- expressed in months or years -- when half the patients are expected to be alive. It means that the chance of surviving beyond that time is 50 percent"
https://www.verywell.com/median-survival-ms-2252158
"Historically, children with CF died as infants, and as recently as 1980 the median survival was less then 20 years. However, over the past 3 decades the lifespan of CF patients has risen dramatically, and in 2006 the median survival in the United States was 37.5 years (shown by red line, figure on right)."
https://www.nationaljewish.org/conditions/cystic-fibrosis/life-expectancy
The median is the half point where half of people with cf die before that age and half live longer. There are some cf patients if their 70s, 80s,and 90s, but unfortunately this is not the norm. A 50 percent chance of living past 37 does not sound very good to me, especially when I'm thinking about my child.
https://www.verywell.com/median-survival-ms-2252158
"Historically, children with CF died as infants, and as recently as 1980 the median survival was less then 20 years. However, over the past 3 decades the lifespan of CF patients has risen dramatically, and in 2006 the median survival in the United States was 37.5 years (shown by red line, figure on right)."
https://www.nationaljewish.org/conditions/cystic-fibrosis/life-expectancy
The median is the half point where half of people with cf die before that age and half live longer. There are some cf patients if their 70s, 80s,and 90s, but unfortunately this is not the norm. A 50 percent chance of living past 37 does not sound very good to me, especially when I'm thinking about my child.
The lifespan they state isn't an average though. It's a halfway point. The median survival is 37 years old. Meaning of patients with cf half die before this age, and half die later. If you wrote all the ages down from highest to lowest and halfway through you marked a line that would be the median. The mean or average would be if you added all the ages together and divided by the number of ages you have. I dont want funding for research to drop, because people think oh well they are mostly living past 40 now. A 50 percent chance of living to 37 doesn't sound very good to me. It scares me a lot really.
It is scary! Especially when you hear stories of people who do everything they're supposed to do and still come down with a CF bug, get knocked for a loop from influenza.... Which is why I try not to dwell to much on those numbers and focus on trying to keep ds healthy. I try very very hard not to focus on the what ifs. In the back of my mind I'm always waiting for the other shoe to drop. Especially if ds is sick. A couple months ago he had some sort of stomach bug and pretty much ran a fever for over a week. Scared the heck out of me and my mind went into overdrive! I have to remind myself that DS is a normal child, who needs to do a few extra things --- treatments, meds --- to keep him happy and healthy. One step at a time.... Advice we got from the doctor when ds was diagnosed as a baby. Try not to dwell on CF. Limit yourself to 15 minutes tops, otherwise focus on your child. Easier said than done when you're freaking out... But you've got a good, smart kid who just happens to have been diagnosed recently with a genetic disease.
I have been fortunate enough to become family friends with my pediatric CF doctor, so I hear a lot of updates and exciting things when I see him. ALL of them are really encouraging! When it comes to the median survival age, try not to pay attention to it. First of all each year it increases and most of the information out there isn't up to date. This is the first time in about 15 years CF patients have had new meds coming down the pipeline that are working and adding extra time to our lifespans. When I was diagnosed in 1992 our social workers told my parents to plan for my FUTURE, NOT death. I worry now because I'm afraid at some point I might get too healthy to stay on disability because of these new meds. Plan for your child's future. Save for college. Their future is bright and exciting! If you spend so much time on worrying about a number (which is only what the median survival age is) you're going to miss out on so many other things. I'll leave you with a quote my therapist taught me that has had so much impact in my life in acceptance with CF. " Worrying doesn't prevent death, It prevents life."
I have been fortunate enough to become family friends with my pediatric CF doctor, so I hear a lot of updates and exciting things when I see him. ALL of them are really encouraging! When it comes to the median survival age, try not to pay attention to it. First of all each year it increases and most of the information out there isn't up to date. This is the first time in about 15 years CF patients have had new meds coming down the pipeline that are working and adding extra time to our lifespans. When I was diagnosed in 1992 our social workers told my parents to plan for my FUTURE, NOT death. I worry now because I'm afraid at some point I might get too healthy to stay on disability because of these new meds. Plan for your child's future. Save for college. Their future is bright and exciting! If you spend so much time on worrying about a number (which is only what the median survival age is) you're going to miss out on so many other things. I'll leave you with a quote my therapist taught me that has had so much impact in my life in acceptance with CF. " Worrying doesn't prevent death, It prevents life."
Thanks! I will definitely still plan for his future, and expect him to also. Up until last month I had what I thought was a healthy 12 year old kid. Yeah he coughed on and off which I attributed to allergies or maybe some very mild asthma. In the span of 2 weeks I find out he has cf, prediabetes, extremely PI, coughing up blood, pneumonia, cultured mrsa and 2 strains of pseudomonas,pft 67 percent, very low vitamin d level, and hospitalized for two weeks with a picc line and iv antibiotics. I know there are new drugs coming and I'm so happy about that. I hope when we get his genetic tests back he will be eligible for one. I guess I feel like a lot of people don't take it as seriously because of what they say is estimated lifespan or median survival now. A lot of people don't seem to understand that that is 50 percent before and after that age. I see people risking having more kids with cf for one which is up to them, but I don't think I could intentionally put another child through all of this, and I don't want it to affect donations for research. Everyday on groups I see mothers saying they were told there would be a cure in their child's lifetime and now their child is gone. I'm trying not to dwell on the negative. I'm sure after awhile this all just becomes part of your life and more routine. I didn't mean to offend anyone or bring anyone down. I hope one day you will be too healthy for disability, although I can see how that would be difficult to deal with also. I guess it's easier not to think about when your child is mild or not having issues, but when they are having all kinds of problems it sure brings the negative parts to light pretty quickly.
It is scary! Especially when you hear stories of people who do everything they're supposed to do and still come down with a CF bug, get knocked for a loop from influenza.... Which is why I try not to dwell to much on those numbers and focus on trying to keep ds healthy. I try very very hard not to focus on the what ifs. In the back of my mind I'm always waiting for the other shoe to drop. Especially if ds is sick. A couple months ago he had some sort of stomach bug and pretty much ran a fever for over a week. Scared the heck out of me and my mind went into overdrive! I have to remind myself that DS is a normal child, who needs to do a few extra things --- treatments, meds --- to keep him happy and healthy. One step at a time.... Advice we got from the doctor when ds was diagnosed as a baby. Try not to dwell on CF. Limit yourself to 15 minutes tops, otherwise focus on your child. Easier said than done when you're freaking out... But you've got a good, smart kid who just happens to have been diagnosed recently with a genetic disease.
I'm trying not to dwell the negative. I think it's probably like you said when you're child is mild or not having a lot of issues it's easier not to think about the negative. In the span of a few weeks I've found out my 12 year old who I thought was pretty healthy has cf, is severely PI, pft 67 percent, coughing up blood, pneumonia, culturing mrsa and two strains of pseudomonas, prediabetic, and in the hospital with a picc and iv antibiotics for two weeks. We haven't had time to build a routine or new normal yet. And when your child is suddenly having all kinds of issues it can be hard to ignore the negative. But I'll do everything possible to keep him as healthy as I can until there is a cure or at least medications that can manage it better.
Thanks! I will definitely still plan for his future, and expect him to also. Up until last month I had what I thought was a healthy 12 year old kid. Yeah he coughed on and off which I attributed to allergies or maybe some very mild asthma. In the span of 2 weeks I find out he has cf, prediabetes, extremely PI, coughing up blood, pneumonia, cultured mrsa and 2 strains of pseudomonas,pft 67 percent, very low vitamin d level, and hospitalized for two weeks with a picc line and iv antibiotics. I know there are new drugs coming and I'm so happy about that. I hope when we get his genetic tests back he will be eligible for one. I guess I feel like a lot of people don't take it as seriously because of what they say is estimated lifespan or median survival now. A lot of people don't seem to understand that that is 50 percent before and after that age. I see people risking having more kids with cf for one which is up to them, but I don't think I could intentionally put another child through all of this, and I don't want it to affect donations for research. Everyday on groups I see mothers saying they were told there would be a cure in their child's lifetime and now their child is gone. I'm trying not to dwell on the negative. I'm sure after awhile this all just becomes part of your life and more routine. I didn't mean to offend anyone or bring anyone down. I hope one day you will be too healthy for disability, although I can see how that would be difficult to deal with also. I guess it's easier not to think about when your child is mild or not having issues, but when they are having all kinds of problems it sure brings the negative parts to light pretty quickly.
I agree. When you are completely blindsided by this it is a lot to take in. My list of issues is a mile long too. From the bottom of my heart I wish no one ever would have to know what this is like. I know it's a lot on parents. Mine talked with a therapist at one point to help them develop some coping skills and having someone to vent to because a caregiver to someone with CF needs help and looked after emotionally and mentally too. The majority of all inpatient stays for CF patients are about 2 weeks to start. But they will get him stable and on a good routine. Once you get all that, everything does become second nature. It's a lot to take in and it's frustrating. The most important thing is to make CF better known. I think it's starting to become that way because of the whole "The Fault in Our Stars" movie. We have CF walks that happen and lots of fundraising that goes on so that's amazing! This site I visit everyday. They update it daily (except on weekends) and it shows all the things that are happening with development of drugs and research that is happening. It's given me a lot of hope and keeps me informed. Check it out! https://cysticfibrosisnewstoday.com/
There is a bit of a yin and yang about this disease. The seriousness of the disease VS the hope for a great future. When it comes to medical care, medical research, and fund raising the focus should be on seriousness of it. When it comes to enjoying activities, spending time with loved ones, and building a life focus on the future.
There will be a few times that serious and hope need to be very carefully balanced: family planning, career planning, marriage/relationships, end of life planning, etc. I've personally found that much of the balance with those types of discussion comes by pushing the worry aside until the discussion needs to be had, then once the discussion is had make the adjustments and move forward.
Hopefully you will be able to get some of your main worrying out of your system and find a balance. Then you will find more opportunity to set down the seriousness of CF and enjoy what will become a fairly normal daily life. If finding that balance takes too long or becomes overwhelming consider finding a therapist to work with.
There will be a few times that serious and hope need to be very carefully balanced: family planning, career planning, marriage/relationships, end of life planning, etc. I've personally found that much of the balance with those types of discussion comes by pushing the worry aside until the discussion needs to be had, then once the discussion is had make the adjustments and move forward.
Hopefully you will be able to get some of your main worrying out of your system and find a balance. Then you will find more opportunity to set down the seriousness of CF and enjoy what will become a fairly normal daily life. If finding that balance takes too long or becomes overwhelming consider finding a therapist to work with.
According to a recent Wall Street Journal article, based upon information furnished by CFF, the median age in the US is 47 and in Canada it is 59. This means that the median age has moved up 10 years in the past 10-11 years.
Based upon the new meds, it will move even faster in the future.
Based upon the new meds, it will move even faster in the future.
I agree. When you are completely blindsided by this it is a lot to take in. My list of issues is a mile long too. From the bottom of my heart I wish no one ever would have to know what this is like. I know it's a lot on parents. Mine talked with a therapist at one point to help them develop some coping skills and having someone to vent to because a caregiver to someone with CF needs help and looked after emotionally and mentally too. The majority of all inpatient stays for CF patients are about 2 weeks to start. But they will get him stable and on a good routine. Once you get all that, everything does become second nature. It's a lot to take in and it's frustrating. The most important thing is to make CF better known. I think it's starting to become that way because of the whole "The Fault in Our Stars" movie. We have CF walks that happen and lots of fundraising that goes on so that's amazing! This site I visit everyday. They update it daily (except on weekends) and it shows all the things that are happening with development of drugs and research that is happening. It's given me a lot of hope and keeps me informed. Check it out! https://cysticfibrosisnewstoday.com/
Thanks for the link! I will definitely check it out. I've done a ton of research in the last month. We have signed up to walk in the great strides walk next month, and are trying to raise money.
That's great that it is increasing! I did see recently about Canada being about 10 years longer. Although I remember reading that it may not be entirely accurate that they are that far ahead if the US, but I can't remember what the reasoning was now. I'm not sure why people with CF would be that much better off in Canada. It seems like they would get just as good if health cars in the US.
It just may be that Canada has Universal coverage. A one-payer system paid for with taxes and not controlled by insurance companies. I might suggest that you contact the Cystic Fibrosis Foundation and tell that their numbers are not accurate.
When did I say that the Cystic Fibrosis Foundation had inaccurate numbers? Actually in the article it states that people with CF who have private health insurance have the same death rate and age as people in Canada. It's people that are on government funded insurance in the US that have a higher death rate and lower age or people with no insurance had the highest. There could be a lot of reasons for that also, since people on Medicaid or no insurance are generally poorer than people with private insurance, so nutrition, depression, lack of compliance with treatments due to lifestyle or lack of education could all play a part. Statistics can be misleading for many different reasons. For one the CFF in the United States does not track every CF patient, only the ones that go to CFF accredited centers, many of the healthiest CF patients go to regular pulmonologists or GI doctors, and are not tracked by the CFF in the US, where as Canada probably has an easier time tracking everyone since they all use the same health insurance and healthcare system. It also stated in the article that Canada implemented the high fat diet in the 70s for CF patients and the United States didn't until the 80s, so they have had a longer time to benefit from that.