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.