12 year old just diagnosed

[Sunny9432]

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.

[Sunny9432]

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.

[Printer]

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.

[kenna2]

The article I read stated 3 main reasons. 1) Universal Healthcare, 2) Different approach to lung transplants, and 3) Different approach to nutrition beginning at birth

[Sunny9432]

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.

[Printer]

OK whatever you say.