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ERS International Congress: Martine Puhl, the patient's perspective part 1

 

Martine Puhl attended the ERS International Congress as a patient advocate representing U-BIOPRED. Here, she shares her experiences of the Opening Ceremony and the Healthy Lungs for Life launch event.

So, my first ERS International Congress begins. I am attending as a patient representative.

It gets off to a good start because I get to sign up at the VIP counter. VIP = Very important patient…?

Finally, something  positive can come from my illness…

Meeting at the U-BIOPRED stand, it’s nice to see everybody again; it has been a while since we were last together.  

The Opening Ceremony is about to begin. Sarah has reserved us some seats in the front row. I could get used to this!

A lot of honours and medals are awarded to professionals with a long track record in research and medicine. The mood is inspiring and friendly.

But there are still reasons to be worried and restless.

The professionals make statements such as: “Only five effective medicines have been developed in the last 30 years” and “We are so far behind other research fields, like cardiovascular, cancer”. The costs of developing medicines are sky high, now reaching about €1 billion!

It dazzled me. I knew that there was a lot to do but I was not aware that the need was so urgent.

And it continued:

”…every second worldwide someone dies due to a lung disease.”
”…in Germany 311 people die each day because of a lung disease.”
“… why does society accept this, silently?”

This was shocking and struck me. Why is this not commonly known? Why is there no effective action plan? Where are the governments, as stakeholders? Where is the money to solve this? Why do I always feel that my illness is not taken seriously; that patients should adapt, and not vice versa?

So, I was happy to hear and see about the new Healthy Lungs for Life campaign being launched at the Congress.

It aims to raise awareness of how important clean air is. No one can avoid dirty air – it affects everyone!

So, ”Healthy Lungs for Life”. That’s a good start. A friendly campaign.

At the Odeonsplatz, it is great to see that a lot of people want to test their lungs. This shows them how vital the lungs are. And how vulnerable they can be…

If nothing changes, the number of people with illness and dying will go up.

“And what about the future?”

Children in Munich were asked this question, and they made an impressive short movie in response. It showed both a positive and a negative vision of the future.

This was so powerful and I really hope that their negative vision will not come true.


Everybody using an oxygen machine when they are walking in the park rather than super trees, with super air.

So, as a patient, I hope:

-          That researchers become more united and collaborate with colleagues

-          That they open their view to other research areas, because developments are happening so rapidly

-          That governments will make this a priority

-          That we help people with lung diseases to live better lives

-          And survive…