Once you understand that there may not be a cure for idiopathic pulmonary fibrosis (IPF), it's time to develop a plan for your future. Understand that your symptoms may get worse over time, and you may not be able to do many of the things that you did before you had IPF.
Change your life
When you have IPF, you will need ongoing medical care. Find treatment by a pulmonologist who specializes in IPF or interstitial lung diseases. Or visit an IPF specialist at one of the major IPF centers.
A treatment plan may relieve your symptoms, slow or stop the fibrosis (scarring) but it will also give you new hope. Strictly follow your treatment plan. For example:
Social Security Disability Compassionate Allowances
Social Security has an obligation to provide benefits quickly to applicants whose medical conditions are so serious that their conditions obviously meet disability standards.
Compassionate Allowances (CAL) are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. Compassionate Allowances allow Social Security to quickly target the most obviously disabled individuals for allowances based on objective medical information that we can obtain quickly.
CAL conditions are developed as a result of information received at public outreach hearings, comments received from the Social Security and Disability Determination Service communities, counsel of medical and scientific experts, and our research with the National Institutes of Health (NIH). Also, we considered which conditions are most likely to meet our current definition of disability.
Commissioner Astrue has held seven Compassionate Allowances public outreach hearings. The hearings were on rare diseases, cancers, traumatic brain injury (TBI) and stroke, early-onset Alzheimer's disease and related dementias, schizophrenia, cardiovascular disease and multiple organ transplants and autoimmune diseases.
On July 14, 2011, Commissioner Astrue held an event at the Dirksen Senate Office Building, room 106, at 10:00 a.m. in Washington D.C. to announce the addition of 12 new conditions to the Compassionate Allowances list of conditions. This addition brings the number of Compassionate Allowances conditions to 100.
(source: - www.socialsecurity.gov/compassionateallowances )
Complete List of Compassionate Allowances Conditions - (Please look for Idiopathic Pulmonary Fibrosis)
Living with Advanced Lung Disease: A Guide for Family Caregivers :
“Never let go of hope. One day you will see that it all has finally come together. What you have always wished for has finally come to be. You will look back and laugh at what has passed and you will ask yourself... 'How did I get through all of that?”
“Believe and act as if it were impossible to fail.”