For people living with IPF

 

Living with IPF can take its toll, physically and emotionally. Learning to cope with your condition and coming to terms with your prognosis is particularly difficult if doing so alone. Finding out as much as possible about IPF can help you feel more in control. 

Patient organisations are a good place to start because they provide information dedicated to people living with IPF. Joining a local support group can be helpful for you, as you can meet other IPF patients and discuss your experiences. Support from your family and friends is essential, but reaching out to fellow IPF patients going through the same experience can be particularly beneficial. Such groups can be a great source of shared wisdom, experience, strength and solidarity. 

Many support groups are organised within hospitals or in the local community – your doctor or respiratory nurse should be able to tell you more. You can also get in touch with patients in your country using the organisations in the table on page 69. They are all EU-IPFF members.

General advice for carers

 

Caring for someone with IPF is a difficult and demanding task, which can be both emotionally and physically draining. If you’re caring for someone suffering from IPF, let your family doctor know so they can advise you on your own health and refer you for specialised support if you need it. 

Remember to take care of yourself, as the day-to-day life of a caregiver can be challenging. Finally, do not be afraid to ask the doctors and nurses supporting your relative or friend with IPF for specific advice on how best to help them. 

There are many support organisations for carers that can also help you through this experience. And in some EU countries, carers may be eligible for financial assistance or in-kind benefits – your doctor should be able to tell you more. 

Here are some suggestions that may help you to be an effective caregiver. 

Be involved

Be actively involved in your loved one’s medical treatment and take part in visits to doctors.

Attend patient support group or association’ meetings
and take an active role

Know which medications your loved one takes and create a medication list. Know how to operate any medical equipment used by your loved one.

Encourage independence and a healthy lifestyle

Let your loved one do everything they can for as long as possible.
Help your loved one maintain a healthy diet and exercise programme. Help them pay attention to their weight.

Learn about palliative care 

Learn about palliative care options, even long before they seem to be needed.

Help prevent infections

Help prevent respiratory infections by, for example:

  • washing your hands; 
  • getting vaccinations;
  • avoiding public transport; and 
  • avoiding large mass gatherings of people.

Look after yourself

Take care of yourself. Find someone who can take over your tasks when you are tied up with other things.

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European support for people with IPF

CountryEU-IPFF MemberWebsite
AustriaLungenfibrose ForumVisit Website
AustriaLOT AustriaVisit Website
BelgiumBelgische Vereniging voor Longfibrose vzw (BVL)Visit Website
BelgiumAssociation Belge contre La Fibrose Pulmonaire Idiopathique (ABFPI)Visit Website
FranceAssociation Pierre Enjalran Fibrose Pulmonaire Idiopathique (A.P.E.F.P.I)Visit Website
GermanyLungenfibrose e. V.Visit Website
GreeceHellenic Pulmonary Fibrosis Association LUNGS OF LIFEVisit Website
IrelandIrish Lung Fibrosis Association (ILFA)Visit Website
ItalyAMA - FUORI DAL BUIOVisit Website
SpainAsociación de Familiares y Enfermos de Fibrosis Pulmonar Idiopática (AFEFPI)Visit Website
The NetherlandsLongfibrose NLVisit Website
UKBritish Lung Foundation (BLF)Visit Website
UKAction for Pulmonary Fibrosis (APF)Visit Website
UKPulmonary Fibrosis TrustVisit Website