One thing that amazes me is how much information is available on medical conditions and how few people ever find it. Hopefully things like this can help with that.

Coalition for Pulmonary Fibrosis Announces Publication of New Educational Tools for Patients

Preliminary Results From Latest Research Initiative Demonstrate Need for Lung
Transplant and Pulmonary Rehabilitation Education for IPF Patients and
Caregivers

SAN JOSE, Calif., Sept. 17 /PRNewswire/ — The Coalition for Pulmonary
Fibrosis (CPF) announced today the publication of two new educational
brochures: ‘Lung Transplantation: What Every Patient with Idiopathic
Pulmonary Fibrosis Should Know’ and ‘Oxygen Management and Pulmonary
Rehabilitation for the IPF Patient’.

The two brochures were created for patients, family members and physicians
alike based on preliminary results of the CPF’s Basic Research Questionnaire,
an education initiative launched last year to better understand the impact of
idiopathic pulmonary fibrosis (IPF) on patients and families, and to help the
foundation grasp the educational needs that arise for those fighting the
disease.

To date, the CPF has received more than 1,400 responses to this
ground-breaking survey, and based on educational gaps identified by patients,
discovered the need for improved education and awareness on two very important
topics for IPF patients; lung transplantation and pulmonary rehabilitation.

Interim results of the CPF’s research questionnaire found that among
current patients, 30 percent responded that their physician has not discussed,
or even mentioned the topic of lung transplantation, a potential treatment
option for IPF patients under 65. Of those patients under the age of 60,
fewer than half (47 percent) said they have been advised to seek a lung
transplant. Additional data from a Duke University study also indicates that
more than 50 percent of those with IPF who are on transplant lists will pass
away before a donor lung becomes available. [via Feedster Search: Pulmonary Fibrosis]

This also makes me very thankful that I found the doctors I did as I went through my diagnosis. I was quickly forwarded to a pulmonary specialist and he was able to give me a preliminary diagnosis almost immediately. Once it was confirmed that I did actually have Pulmonary Fibrosis we sat down and talked about what it all means, what treatments were available, how things tended to progress, what it meant long term, the whole thing. I still find it kind of stunning that other people have not had this same experience.