A PLN patient ever said to us (2016): “… 2 years ago, I was diagnosed with the PLN gene mutation. All those years, I wasn’t able to share or talk about this heart disease with others that struggle themselves with the same situation every day… fortunately, this is now different.“. You are not alone. Through our PLN Foundation, you have the possibility to share your own story with other PLN patients and family members.
Recognizable things that matter…
By telling your story, you will propably mention how the impact of the PLN diagnosis has affected your daily life, how other family members reacted and if they were willing to undertake an ancestral research in connection with possible PLN genetic patterns in your family, how unsecure you always can be by heart rhythm disorders, how your new life goes on with an ICD, pacemaker, or even with a VAD… so many recognizable things to share with other PLN fellows… because it does matter.
Some warning signs and symptoms of the PLN gene mutation described by others can maybe help you, as patient and partner, to (early) recognize those in your lifetime situation, independently of the disease stage you are currently in. By telling your story, you also will be able to make contact with other PLN fellow patients and their family members, sharing this way experiences about ethical PLN related topics or some difficult decisions at some point you may have to make.