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PLN Foundation. Foundation of patients for patients.

Patients contact

plnheart.org Patients contact

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Patients contact

Whether you have known for some time that you are a carrier or you have just heard the diagnosis: as a PLN carrier you have a lot of concerns.  What awaits me?What are the consequences for my work? What if I have a child wish? Do I have to test my children? Information about symptoms and use of medication .. The PLN Foundation is here for you.

Patients contact

Margriet Neervoort applied at the PLN Foundation as a volunteer for contact with fellow patients. She introduces herself:

My name is Margriet Neervoort-Klinkert. I was born in 1958. I always thought 1958 was a good year. I grew up in Noord-Scharwoude, after which I lived in Amsterdam for 20 years. Since 1997. I live in my place of birth again with my husband and 2 children. I work as an English teacher and dean at a secondary school in Schagen.

In 1993 my oldest brother died at the age of 45. He was previously diagnosed with cardiomyopathy. He died after a failed heart transplant. In 2007 my younger sister went through an heart attack. After medical investigations, she was diagnosed with dilated cardiomyopathy and an ICD was implanted. Genetic testing was started and it turned out that my sister was a PLN gene carrier. The gene was just known. I was asked to participate in the genetic testing and I was convinced I didn’t have it. Unfortunately the reality was different.

I was gene carrier with symptoms of illness, and I did not realize it myself. This is how I ended up in the world of PLN, and with me also my husband and children. I’ve been through a lot. I know from my own experience what happens after the diagnosis and what impact it will have on yourself and your family, certainly when a child also appears to be sick.

Symptoms of illness, use of medication, consequences for work, hospital admissions, testing dilemmas, contact with medical specialists, and so on. I hope that with my own experiences I can help other people to cope better with this disease, or simply offer a listening ear. And as for my year of construction -1958- , the engine is still running, only slightly slower …

If you have a certain issue regarding the above subjects or you just want to talk, you can contact me through the PLN Foundation.

Volunteers

PLN Foundation works with an enthusiastic team of volunteers. Do you also want to help us? Please contact us!

Genealogy

The mutation was discovered in the Netherlands in 2010 and probably originated spontaneously between 1200 and 1400, in someone in the southeast of the province Friesland. All carriers of the mutation in the Netherlands descend from this one Frisian ancestor and we are looking for our ancestor. Do you want to share your family tree with us? Please get in touch!

School assignments

We are regularly asked to send information or material for school papers and school assignments. We are happy to do this! Please let us know if you want to receive information!

You are here: plnheart.org Patients contact

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PLN Genetic Heart Disease

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PLN Foundation. Foundation of patients for patients.

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Our Foundation has been established by volunteers or people suffering from PLN, family members and their loved ones, and tries to inform PLN gene carriers as much as possible about the latest developments and PLN studies.

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