A recent survey of more than 150 idiopathic pulmonary fibrosis (IPF) patients demonstrates the invisible burden the rare disease causes.
It is no secret that any rare disease has the potential to cause serious psychological effects. Suffering physically makes it so we are not equipped to deal with even the smallest of psychological stresses. Our lives are consumed by our illness, one that we never asked for.
Idiopathic pulmonary fibrosis causes the hardening of lung tissue. This results in shortness of breath and a dry, hacking cough that doesn’t go away. It’s progressive and the physical toll is devastating.
The survey shows some serious concerns amongst patients with this disease, that many people in the rare disease community can relate to. Patients are worried about:
- the irreversible progression of IPF
- acute IPF exacerbations which can lead to death in a very short time (62%)
- not being able to continue their favorite activities or hobbies because of the physical problems brought on by IPF
Not surprisingly, patients reported feelings off hopelessness, anxiety and fear. Not only does this study further emphasize the need for physical and psychological support for those suffering from IPF, but it also highlights the need for IPF Awareness.
