Patient
insights
on IPF

Patients diagnosed with IPF offer tips and advice on managing the disease – from diagnosis,
to management options, to living with the condition.

You are not alone.

INTRODUCTION

If you are reading this, you or a loved one may have recently been diagnosed with IPF.

Whilst IPF is a relatively rare condition, there are still more than 15,OOO people in the UK living with the disease today.

The fact that IPF is relatively unheard of makes it all the more frightening and isolating for patients and their loved ones.

IPF is a serious condition, but there are strategies for learning to deal emotionally with the disease, and management options that can help manage its impact. 

"I had
absolutely
no idea
what idiopathic
pulmonary
fibrosis was."

FRED, CANADA

Person
Journey to diagnosis

When patients visit their doctor with symptoms of breathlessness and a persistent cough, it can take a while for IPF to be diagnosed. This is because IPF symptoms can be similar to those of asthma or heart disease and these much more common conditions are usually treated and ruled out first.

Also, up to the disease starting to take hold, patients can be physically active, which makes the problem even more difficult to identify.

This slowness and uncertainty of diagnosis can be bewildering and frustrating for patients.

Person
“I was doing
a triathlon
and I was slow
at the swim, on the cycle
everyone was overtaking
me and on the run I was
out of breath.”

RON, UK.

Person
“I was doing
a lot of sports.
Bowling, curling, skiing,
golfing, softball.
I noticed I had more
trouble walking and
that I was coughing.”

Robert, Canada.

Person
“There are a
thousand things
that go through your head.”

Bertold, Germany.

DIAGNOSIS: "it is ipf"
Person
“I guess the main feeling
you have when you’re
diagnosed is that it’s
spectacularly
unfair.”

Tony, UK.

Person
“My tip to anyone
that’s been diagnosed
with IPF is to
find a support
group;

find like-minded people
to talk to.”

Ron, UK.

Person
“The most important thing,
in my experience, is
go to a lung
disease centre

as soon as possible,
where doctors will be
able to help you.”

Daniela, Italy.

A diagnosis of IPF can leave patients and their loved ones feeling isolated by this irreversible condition.

It is first of all recommended that patients learn as much as they can about the disease from websites such as fightIPF.co.uk, so they are able to discuss management options with  their respiratory specialist and other healthcare professionals caring for them.

Patients should share their concerns and knowledge about IPF so that  friends and family are aware of the changes they will go through and are able to provide them with the right kind of support.

Joining online support groups can also help the patient share experiences and feel less alone (see Key Links for details).

Management options - the right approach for you

The doctor will discuss with patients the various management options available – ranging from pulmonary rehabilitation, to medication, to lung transplant.

He or she will then help the patient decide which option suits them best.

Fully understanding information about therapy choices is important  so it is recommended that patients take a friend or family member  along to hospital visits, to assist them  to accurately recall and understand  the information their doctor or nurse has given them, so that they can  make an informed decision about  their options.

Friends and family can help to encourage the patient to stay positive and follow the advice given by their healthcare team to manage their condition.

Person
"Patients should have
some say in what’s
right for them
because there are
different options
on the market.”

Ron, UK.

Person
“Consult the
doctor together
with your
partner…

My wife always pays
attention – makes sure
I’ve understood
everything correctly.”

Bertold, Germany.

Person
“For the families, it’s
important to stay positive;
encourage the patient to
keep up their
therapies,
so they
can lead a normal life.”

Claude, France.

LIVING WITH IPF
Person
“It’s important to see people, to go out…
to continue
doing what
I do now…
for as long as possible.”

Claude, France

Person
“I think the support
that comes from
family and
friends

is critical.”

Jackie, UK (caregiver)

Person
“The therapy is
allowing me to
achieve my
goals in life.”

Ron, UK.

It is normal for patients to go through a rollercoaster of emotions immediately after diagnosis – worry, anxiety, relief, apprehension, readjustment.

As IPF spreads, many day-to-day activities will become harder. By arming themselves about their condition and management options available to them, patients can confidently discuss with their doctor the approach that may help them maintain their independence for longer and continue to live a fulfilling life. 

It also helps them to make plans for the future and embrace the support of loved ones.