How do symptoms develop in PLN? We asked our supporters!

In May 2023, scientists worldwide left for Athens for the CURE-PLaN consortium. This group met annually to share new scientific insights and results from research. During the European consortium meeting (in Athens), our communications consultant Nikki made several vlogs about the meeting. Scientist Peter van Tintelen made an appeal to our supporters.

We are now a few months along and in late 2023 we posted a call in our newsletter and on our social accounts. We put Professor van Tintelen’s questions into a form and it was filled out by 28 people from our constituency. They all shared their thoughts on why they think symptoms develop in PLN, as it is still not clear why symptoms manifest in some carriers and not others.

What triggers the disease?

We are happy to share the results with you. In the first question, we asked for your thoughts on something that could trigger the disease. Most answers link to stress and strenuous exercise. Hormonal fluctuations, especially in women and pregnancies, also occurred. Nutrition and poor lifestyle were also mentioned. So does getting another disease, such as COVID-19. Another explanation mentioned three times was bad luck, which of course it is anyway!

How do arrhythmias occur?

Here we also ended up with stress and strenuous exercise. Poor lifestyle, alcohol and coffee were also mentioned.

What remains to be examined?

Finally, we asked you what remained to be examined. What came out of this in particular is that you want to know why one carrier gets very sick and the other does not. Unfortunately, we have not yet been able to answer this, although as a foundation we would very much like to know this answer as well. Several studies are currently underway in this area.

There were also questions related to pregnancy and PLN. Stress and hormonal fluctuations are both things you believe contribute to the course of the disease. So this is certainly an interesting topic. The last thing mentioned was that people like to fill out questionnaires on such topics. That way our knowledge can be supplemented, so we’ll definitely keep this in mind.

Survey comments

It is interesting to note, though, that stress and emotions are often identified as a trigger for the disease. Recently, two publications have come out saying the following:

1) No association was found between stressful events and personality types and the development of disease;

2) No association was also found between exertion and development of the disease. A link between cardiac arrhythmias and exercise was found, however. That fits well with what is said in the survey.

However, we should immediately note as a side note that these studies were quite small, which may cause these results not to come out.