Lida Naber is the Coordinator at the Dutch Pulmonary Fibrosis Society. We asked her about her work, the main issues that affect people with pulmonary fibrosis in the Netherlands, and what the country’s new legislation on organ donation might mean for people with the condition.
Could you tell us a little about yourself and how you became involved with the Dutch Pulmonary Fibrosis Society?
I am 60 years young, have been happily married for 40 years and have one daughter who is currently expecting her first child. I have had allergic asthma since childhood, but thanks to good medicines, it has hardly affected me since puberty. To keep fit – which is very important for people with chronic conditions – I cycle to work, walk long distances and have a kitchen garden. These activities give me a lot of energy to do my work, but also help to clear my mind as my work is rather busy and emotional. 10 years ago, I found a nice job at the Dutch Lung Foundation (Longfonds) and they arranged for me to work at the Dutch Pulmonary Fibrosis Society two days per week. Both societies have a close partnership with each other.
What is the mission of the Dutch Pulmonary Fibrosis Society?
The Dutch Pulmonary Fibrosis Society has approximately 600 members. In short, our mission is to promote research for adequate treatment, to advocate for the pulmonary fibrosis issues, to promote disease awareness, and to provide a supportive environment for patients and their loved ones.
Could you give an overview of your organisation’s main activities?
We have many activities such as developing information booklets for patients and caregivers. Four times a year we present a magazine with patient stories, information and news. We organise a patient meeting twice a year, bringing together around 120 participants.
In September we also organise patient meetings in cooperation with – and at the location of – several hospitals and expert centres. In 2017 over 700 people (patients, partners, caregivers and other people who were interested) took part. The subjects covered were: cause and treatment of pulmonary fibrosis, research, how to learn to live with this disease and end of life care. We also gave every patient a pedometer as a little present to encourage them to walk. As Hippocrates said in 400 BC, “walking is the best medicine”. With permission, we copied the 2000 Steps a Day initiative developed by the Irish Lung Fibrosis Association.
What are the main challenges facing people living with pulmonary fibrosis in the Netherlands?
Pulmonary fibrosis is a serious disease which cannot be cured. Living with this idea is very hard – and even harder for loved ones. The course of pulmonary fibrosis is unpredictableand varies per person. Also it is rare, with about 3000 people in the Netherlands diagnosed with pulmonary fibrosis. Most people do not know what pulmonary fibrosis is, and may confuse it for chronic obstructive pulmonary disease (COPD). Having to explain what having pulmonary fibrosis means is very difficult, as you often cannot tell someone has it from the outside, and people often look ‘well’ because of their medication. People with pulmonary fibrosis also have to deal with having less energy, which affects their daily activities and being able to do the things that are important to them.
You recently welcomed a change to organ donation policy in the Netherlands, meaning that all adults will automatically be organ donors unless they opt out. Could you tell us more about this, and how your organisation supported this legislation?
Longfonds was our lobbying partner; we supported their activities and are grateful for their effort. After many years of fighting and campaigning, the lack of donor organs can be addressed. This gives more promise for the future for people already waiting for donor lungs, and those who will need them in the future. Pulmonary fibrosis still has no cure; its progression can only be slowed by some medicines. A lung transplant is still the only treatment which can give eligible patients a good quality of life for years.
Would you like to highlight any other aspects of your work?
In my work I speak to many people suffering from pulmonary fibrosis, their partners and their children. Questions which vary from “where can we meet other people?”, to “can I have a second opinion?”, to “I just had a diagnosis, do you have information for me?”. I always tell them that we cannot give medical advice, but try to lead people the way in the world of lung care.
The most emotional aspects of my work are the many messages and phone calls per year from relatives in which they tell us that their beloved one has passed away because of pulmonary fibrosis. Sometimes patients call me to say goodbye because they know their life is ending very soon. I have now learned to deal with these conversations – and I am grateful to do this.
When I was young I wanted to become a travel guide – which I never officially became – but I think I am at the right place with this work!
