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What is IPF?

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Interstitial Lung Disease is any one of over 130 known Chronic Lung Diseases many of which may result in fibrosis of the lung if not treated quickly or if the patient does not respond well to present treatments.

Interstitial Pulmonary Fibrosis is a condition which results from many of the Interstitial Lung Diseases.

These diseases are considered to be relatively rare.  The standard rule of thumb, if there is such a thing, seems to be that 10% of the population is susceptible to contracting one of these diseases and of those, only 10% will derive any benefit from drug therapy.  Hence, 1 in 100 will be able to manage any positive treatment of IPF.  Positive being halting or at the very least slowing the advance of the disease.

Diseases in the ILD category are for the most part considered to be terminal and incurable. Not all are, and in fact some are even reversible or curable under certain circumstances.  Fibrosing however is neither curable or reversible.  

DO NOT take this to mean you are doomed should you contract one of these diseases.

I have UIP or Usual Interstitial Pneumonitus, diagnosed by biopsy in 1990.  Persons with UIP are generally acknowledged to have a life expectancy of 2 to 5 years from time of diagnosis. 

Recently after nearly 10 years, for want of a better term, my UIP has be downgraded to Non-Specific Interstitial Pneumonitis or NSIP.  It is still identified as UIP I think, but apparently I have lived far too long to identify it only as UIP.

Find out all you can about your particular disease.  Remember, your doctor will know more about you and your disease than anyone you meet on the internet or anywhere else for that matter.  Realize you cannot get a six year University Medical Degree in six months on the internet and never forget the adage "A little knowledge can be dangerous!"

Nothing on this site is either presented as fact or medical advice, nor is it intended to be interpreted as such.  Neither is it to be used in the interests of self-diagnosis.  It is only what I have been able to uncover and interpret to my own satisfaction as being plausible or justified to be correct.  This does not mean it is a closed subject unworthy of future corrections.  

One thing you will quickly discover is that for each topic relating to ILD, there are nearly as many points of view as there are types.  Is the glass half full or half empty? It all depends on how you look at it or interpret it I suppose!

Your most effective means of dealing with this disease is your Pulmonary Specialist! If you are dissatisfied with your present medical treatment then by all means seek other qualified professional assistance elsewhere.  But please do not use Dr. Cyberspace. I have it on good authority that he can at times be a few bits short of a byte.

Living with ILD is like surfing in a Hurricane.  Exhilarating highs and depressing lows.  You have to learn to ride the waves.


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