On Saturday, April 20 at Van der Valk in Hoogkerk, Groningen, the first official PLN Youth Day was organized. Under the guidance of an engaged group of volunteers, young porters and their stakeholders were able to get to know each other better, share experiences and ask their questions. We look back on a successful, enjoyable day where every visitor went home with a pleasant feeling.
About 20 young people answered the call to gather for the day. Getting to know each other, sharing experiences, knowing that you’re really not the only one. Telling people how PLN affects you is not easy as a young person, but this day there was every opportunity to do so. Roxanne van Loenen from Amsterdam and Joost Westerhof from Haren (both carriers and initiators) had put together a wonderful program.
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over the line and speed dating
In doing so, they received professional help from rehabilitation center Beatrixoord: Marije Schoonbeek (GZ psychologist) and Inge Schipper (psychomotor therapist) were there to guide the sessions and make sure everyone felt safe enough to expose themselves a bit more and discuss things they wouldn’t discuss with family members or friends. This is accomplished in part by using the game Over the Line and speed dating in small groups.
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At the same time, in the other room, parents, partners, siblings were engaged in the same program. There, the session was under the guidance of Thekla de Jong (psychomotor therapist) and Margreet Altena (medical social worker), both also from Beatrixoord.
Asking questions in safe setting
Meanwhile, all participants could anonymously put any questions they had about PLN into the Question Box. After lunch, both groups joined together and questions were answered by Marije Schoonbeek and cardiologist Dr. Amin of the Amsterdam UMC, dept. AMC. Dr. Amin’s answers were enlightening and clear, especially in the areas of sports, dating and childbearing.
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Main message was: as long as there are no abnormalities at all on your MRI, ECG and ultrasound, you can just live your life. If the cardiologist does already detect that the disease is progressing you may be prescribed some restrictions but this will always be by mutual agreement. No patient is the same!
Dr. Amin also re-emphasized to ask especially the questions you have to your cardiologist: you have nothing to be ashamed of, after all, you are the one who has the mutation and you have every right to get full and clear answers so that you know well where you stand. That’s how you come up with a nice treatment plan together. Dr. Amin is open to any questions you may still have. He can always be reached if you email polikga@amsterdamumc.nl.
PLN Foundation is immensely proud of Roxanne and Joost, and want to thank them and Marije, Inge, Thekla, Margreet and Dr. Amin immensely for organizing and selflessly helping to make this day a success! Due to its success, there will definitely be a sequel so keep an eye on our social media next year.