Patient contact in the USA
Dr. L. Dean Jansen now is our contact for patients in North America!
My name is Leo Dean Jansen. I am a retired orthopedic surgeon who has 9 family members with the PLN heart mutation. I am a board member of the non-profit PLN Foundation. Our foundation is active in research, fundraising, and education for the PLN heart condition. My PLN disease has progressed to the extent that I am on a heart transplant list. Other family members have exhibited different levels of symptoms. My PLN affected mother is currently in her late eighties and has not had any major heart issues. The PLN mutation causes injury to heart muscle cells, heart scarring (fibrosis), and heart rhythm abnormalities. My major problem is heart rhythm abnormalities. Although there are medications that can help with symptoms, no effective treatment currently exists to reverse the PLN heart condition. The PLN Foundation is very active in seeking treatment methods through many medical research initiatives worldwide. Through these projects, I am confident a cure will be found.
I would be happy to share all the information I have gathered on PLN and talk to you about your condition. In addition, we are planning on conducting various PLN information days and would like to invite you to attend. We would also like to keep you updated on our research initiatives and other events. If interested, please send me an email at Dean@plnheart.org.