I think it is both impossible and ignorent of the medical proffession to set a so called 'medion age' for life expectancy of people with cystic fibrosis. When I was born in 1979 my parents were given a bleak prognosis and told that I wouldn't live past 21. I am now 29 and enjoying life to the full. There are so many factors to consider which have an effect on cystic fibrosis, many of which can be positively manipulated to extend and promote a better quality of life. In my own experience I would strongly encourage a positive attitude towards living with CF and disregard the doom and gloom that many doctors wish you to live under. The person is not the illness and I believe it is important to create a life enviroment that acknowledges a responsible approach to medication but yet enforces a strong sensee that the illness is only a tiny part of who each indiviual is. I am a very positive person with regard to my condition and feel that this has contributed to mainting my health.
Also, diet can strongly influence how well we maintain ourselves. Whilst I understand the crucial need to consume fat, I feel that the typical cf diet ignores the other nutrients which our body needs. In my own experience, when I eat a diet rich in a range of fruit and vbegetables as well as of fats, I find that I am a lot healthier. Natural nutrients found in foods have also been studied and some have shown to display corrective behaviour on the CFTR receptor, opening the gate's for ion transport in the epethelia cells. Research papers published on the web site PNAS, document the positive effects of Chilli and vit C on the CFTR. A study linking increased iron intake with increased lung function is also published on this site, there are many CF related research papers listed on this site and almost all of the papers are accessable, free of charge, to all.
For me, natural products have brought new promise of simple, and accessable curative benefits to the treatment of CF and this knowledge has inspired me to embark on a life of research, to seek and identify the magic molecules hidden in nature that are just waiting to be discovered. I start a degree in biochemistry at the end of this month and hope that I will be able to bring a unique insight into researach as I will be both the scientist and the patient.
One last thing that I feel I should share with others whom are searching new ways to defy the progression of their Cystic Fibrosis is my own personal discovery of an eatstern breathing system which is widely practised throughout india but largely unheard of in the west. I can only document my own experience as I have no knowledge of any other case of it being used to control CF. The system is pranayama and I was introduced to it by chance from watching an indian channel on sky where Swami Ramdev was conducting his daily hour of breathing lessons. Basically it is an ancient technique which includes a succession of seven different breathing practices to be followed and applied to life on a daily basis. Swami Ramdev is keen to promote pranayama alleging that when practised properly, illness is reduced dramatically and future illness prevented. If you are interested in the authenticity of this decleration there are many sites independent of Swami Ramdev that corroborate with his magnificent claim. I personally have found the system very beneficial, the most noticable benefit being a new resistence to catching colds and flues, which for me are a nightmare as in most cases these always lead to chest infections. I was wary about starting college last year for fear of being under constant threat of viris but when doing pranayama I found that even when my classes where like plague zones, I remained bug free. The only downside that I can report is that after doing pranayama, any time when I have become eiher lazy or unable to practice due to a full schedule of commitments, a break of a few days or more has been followed by an instant invasion of whatever bug is circulating at the time. This is only my own account though and does not mean to say that the same would apply to others. Pranayama has also reduced the constant niggling cough which has accompanied me throughout most of my adult life. My husband reported that he no longer hears coughing when I am sleeping and he also noticed that my cough generally had become unfrequent to a point that it became unnoticable. Friends at college also quickly noticed a difference (for the worses)in my breathing on the few occasions that my practise of pranayama slipped. The actual practise also acts like physio and is effective in clearaing sputum. I would recommend pranayama to anyone and would be very interested to hear others experience should anyone begin practice or have been doing so already. Like with anything else, be sure to do your research so that you are fully satisfied that you have enough informataion to make an informed decision. If you do decide to do it, a Divvix CD with english translation is available from SwamiRamdevyoga.com and is very cheap, working out at around £5 or £6.
Getting back to life expecancy(sorry about the novel), there are many ways to take control of your life and destiny and go beyond what the doctors can do. The doctors are dedicated and provide us with everything which is available to them, providing us with an invaluable service, but new finds have to make their way through long processes and sometimes in some cases, time means damage. Non-drug products that are investigated in research are within our reach and in most cases, such as Vit C, they pose no threat to our health, and so experimenting at the very worst will do nothing other than what which is cliamed by the pharm Co on the bottle. If you have Cf or are responsible for someone with CF then if you can, research the latest studies, try to find scientific corroboration and make sure to always cross reference with other credible sources. You may find that you come across something life changing. Always be one step ahead and always be positive, and remember that all over the world there are busy scientists successfully battling to find new ways to extend and improve life for those with CF.
On a final note(as some sigh with relief) Medicine and research are advancing at such phenomenol rates that any attempt to put a prediction on life expectancy is done so blindly.
Also, diet can strongly influence how well we maintain ourselves. Whilst I understand the crucial need to consume fat, I feel that the typical cf diet ignores the other nutrients which our body needs. In my own experience, when I eat a diet rich in a range of fruit and vbegetables as well as of fats, I find that I am a lot healthier. Natural nutrients found in foods have also been studied and some have shown to display corrective behaviour on the CFTR receptor, opening the gate's for ion transport in the epethelia cells. Research papers published on the web site PNAS, document the positive effects of Chilli and vit C on the CFTR. A study linking increased iron intake with increased lung function is also published on this site, there are many CF related research papers listed on this site and almost all of the papers are accessable, free of charge, to all.
For me, natural products have brought new promise of simple, and accessable curative benefits to the treatment of CF and this knowledge has inspired me to embark on a life of research, to seek and identify the magic molecules hidden in nature that are just waiting to be discovered. I start a degree in biochemistry at the end of this month and hope that I will be able to bring a unique insight into researach as I will be both the scientist and the patient.
One last thing that I feel I should share with others whom are searching new ways to defy the progression of their Cystic Fibrosis is my own personal discovery of an eatstern breathing system which is widely practised throughout india but largely unheard of in the west. I can only document my own experience as I have no knowledge of any other case of it being used to control CF. The system is pranayama and I was introduced to it by chance from watching an indian channel on sky where Swami Ramdev was conducting his daily hour of breathing lessons. Basically it is an ancient technique which includes a succession of seven different breathing practices to be followed and applied to life on a daily basis. Swami Ramdev is keen to promote pranayama alleging that when practised properly, illness is reduced dramatically and future illness prevented. If you are interested in the authenticity of this decleration there are many sites independent of Swami Ramdev that corroborate with his magnificent claim. I personally have found the system very beneficial, the most noticable benefit being a new resistence to catching colds and flues, which for me are a nightmare as in most cases these always lead to chest infections. I was wary about starting college last year for fear of being under constant threat of viris but when doing pranayama I found that even when my classes where like plague zones, I remained bug free. The only downside that I can report is that after doing pranayama, any time when I have become eiher lazy or unable to practice due to a full schedule of commitments, a break of a few days or more has been followed by an instant invasion of whatever bug is circulating at the time. This is only my own account though and does not mean to say that the same would apply to others. Pranayama has also reduced the constant niggling cough which has accompanied me throughout most of my adult life. My husband reported that he no longer hears coughing when I am sleeping and he also noticed that my cough generally had become unfrequent to a point that it became unnoticable. Friends at college also quickly noticed a difference (for the worses)in my breathing on the few occasions that my practise of pranayama slipped. The actual practise also acts like physio and is effective in clearaing sputum. I would recommend pranayama to anyone and would be very interested to hear others experience should anyone begin practice or have been doing so already. Like with anything else, be sure to do your research so that you are fully satisfied that you have enough informataion to make an informed decision. If you do decide to do it, a Divvix CD with english translation is available from SwamiRamdevyoga.com and is very cheap, working out at around £5 or £6.
Getting back to life expecancy(sorry about the novel), there are many ways to take control of your life and destiny and go beyond what the doctors can do. The doctors are dedicated and provide us with everything which is available to them, providing us with an invaluable service, but new finds have to make their way through long processes and sometimes in some cases, time means damage. Non-drug products that are investigated in research are within our reach and in most cases, such as Vit C, they pose no threat to our health, and so experimenting at the very worst will do nothing other than what which is cliamed by the pharm Co on the bottle. If you have Cf or are responsible for someone with CF then if you can, research the latest studies, try to find scientific corroboration and make sure to always cross reference with other credible sources. You may find that you come across something life changing. Always be one step ahead and always be positive, and remember that all over the world there are busy scientists successfully battling to find new ways to extend and improve life for those with CF.
On a final note(as some sigh with relief) Medicine and research are advancing at such phenomenol rates that any attempt to put a prediction on life expectancy is done so blindly.