New survey gives voice to people living with a rare and devastating lung disease: “When I think of IPF I think of breathlessness”

  • International survey provides unique insights into the emotional
    truths of living with idiopathic pulmonary fibrosis (IPF)
  • Worry and fear are the most common emotions experienced when diagnosed
    with IPF
  • Patient support groups make people with IPF feel less isolated and
    provide access to important information

INGELHEIM, Germany–(BUSINESS WIRE)–An international survey of over 500 people living with idiopathic
pulmonary fibrosis (IPF) in more than 20 countries worldwide reveals the
real-life emotions faced by those with the devastating disease.1
IPF affects approximately 3 million people worldwide,2,3 yet
the reality of the condition remains little understood. The results are
launched on Rare Disease Day 2016 to coincide with this year’s theme
‘Patient Voice’, recognising the crucial role that patients play in
voicing their needs.

Diagnosing IPF can be difficult, and around half of patients are
initially misdiagnosed.4 The average time from first symptoms
to diagnosis of IPF is between one and two years,4,5 and
patients are then faced with the reality that they have an incurable
disease. The emotional turmoil people with IPF experience is clearly
reflected in the answers; many respondents said they felt ‘worried’
(49%), ‘afraid’ (45%), and ‘confused’ (34%) when they finally received a

When asked ‘what do you think of when you think of IPF?’, the thought
most frequently expressed by respondents was breathlessness (33%),1
one of the most common symptoms of IPF.6 As the condition
causes the lung tissue to become thickened, stiff and scarred over time,7
the reality is that shortness of breath makes it difficult for people
affected by IPF to carry out everyday tasks such as showering or getting

The research reveals that the progressive and unpredictable nature of
this fatal lung disease places an emotional burden on those affected by
the condition; almost a quarter (23%) of respondents stated that they
feared not being able to do the things they used to do before having IPF
and one in three people said they felt “frustrated” by the condition
(29%).1 The emotions felt by people affected by IPF vary
following diagnosis and after receiving medical care; 31% of respondents
felt that emotions become more positive and the outlook brighter at that
time whilst 28% felt that emotions become more negative and the outlook
less bright.1

Dr Toby Maher, Consultant Respiratory Physician at the Royal Brompton
Hospital in London, United Kingdom commented: “This thought-provoking
research echoes what my patients talk to me about when we discuss life
with IPF. Thankfully our understanding of the treatment of IPF has moved
forward a lot in the last few years. As physicians we can help address
the negative emotions many patients experience at diagnosis and improve
how they see their future with the disease so they feel positive about
starting effective treatment.”

Early and accurate diagnosis of IPF is important, as this enables the
early initiation of pharmacological treatment and other disease
management options.8

Patient advocacy groups also play an extremely important role in making
it easier to live with the condition; 42% of respondents said that
patient groups made them feel less isolated and provide access to
important information.1

Robert Davidson, President, Canadian Pulmonary Fibrosis Foundation
(CPFF) said: “Living with IPF can be frightening and too few people
appreciate just how isolating living with a rare disease like IPF can
be. This research is an important way for those of us who are affected
to be heard, so that understanding and support for the IPF patient
community continues to improve.”

While a future with IPF is at times a daunting prospect, many people
affected by the disease expressed a positive view of the year ahead.
When asked what they or someone they know with IPF would like to spend
time doing over the next year, 39% said they would enjoy time with
family and one in five (21%) said they would like to travel or go on

~ ENDS ~

Please click on the link below for ‘Notes to Editors’ and ‘References’:

Intended audiences:

This press release is issued from our Corporate Headquarters in
Ingelheim, Germany and is intended to provide information about our
global business.


Boehringer Ingelheim
Corporate Communications
+ PR

Anja Konschak
Phone: +49 6132 77 182415
Fax: +49
6132 – 77 6601