How does it feel to live with IPF?
IPF affects approximately 3 million people worldwide,1,2 yet the reality of living with this condition remains little understood. To address this lack of understanding an online poll was launched during IPF World Week 2015, titled ‘When I think of IPF, I think of...’.
The results of the ‘When I think of IPF, I think of…’ poll have been launched to coincide with Rare Disease Day 2016 and reflect the experiences and emotions of over 500 people affected by IPF, including patients, caregivers and patient advocacy group representatives.3
Feelings at diagnosis
Almost half (49%) of respondents felt ‘worried’, 45% were ‘afraid’, and 34% said they were ‘confused’ when diagnosed with IPF.3
When I think of IPF, I think of...
Hardest thing living with IPF...
18% of respondents said that it was hard ‘knowing that IPF is a fatal disease that has no cure’.3
Emotions felt living with IPF
The role of patient groups
Coping with a diagnosis of IPF can be physically and emotionally exhausting.5 Participating in a patient group or support group offers an opportunity to get together and connect with others who are facing similar experiences and may help people affected by IPF to better manage the challenges of living with their condition.6
The important role of IPF patient groups was reflected in the poll, with 42% of respondents saying that patient groups ‘made them feel less isolated and provided access to important information’.3
Plans for the future
When asked about their plans over the next year many of those polled expressed a positive view; 39% said they would ‘enjoy time with family’ and 21% said they ‘would like to travel or go on holiday’.3