The news that you are a carrier of the PLN mutation comes to everyone differently. Whereas one person can disregard the news relatively quickly, for another it may take longer. The news changes your life. In fact, you are aware that you need to make lifestyle changes. The uncertainty of the disease can also create tension. That’s why we like to tell you how you can support a PLN carrier.
#1 – Guarding boundaries together
Some carriers experience many symptoms due to the disease, including chest pain, fatigue, shortness of breath, heart rhythm disturbances, and sudden cardiac death (in rare cases). Be understanding and help a wearer monitor his or her boundaries properly.
#2 – Be understanding to each other
Some carriers may not show visible symptoms. The symptoms may not manifest themselves – however, that does not mean that these symptoms are not there. Be understanding to carriers who may appear symptom-free from the outside. You never know what they themselves experience.
#3 – Point each other to more information
As a foundation, we invest a lot of time, energy, and money in providing accessible information about PLN. We do this because we value raising awareness about the disease. You can also go through the information on our website for a better understanding of the disease.
#4 – Visit our meetings
Do you want to learn even more about PLN and interact with like-minded people? You are always welcome to attend one of our information sessions or other events. These are free to attend and you always gain new knowledge and meet new people.
#5 – Professional support
Is someone in your environment affected by PLN? This news may also affect you! That’s why we want to mention that you can also seek professional support.