Hi, I’m Fiber Heart. I’m a sudden cardiac arrest survivor, living with Arrhythmogenic Right Ventricular Dysplasia, a genetic heart condition. Mother to a child who also has the mutation causing ARVD. Sibling to a brother killed by ARVD. I am a science and health educator and advocate.
Who my blog is for
My goal is to help those with genetic heart conditions to navigate the jungle of feelings and information as we journey together in hope. To help school communities advocate for AEDs in every school and encourage CPR education of all. To support medical professionals as they recognize the role of the patient in care
What I blog about
Living with Hope
Women & Heart Disease
Genetic Heart Disease
AEDs in School
Children & Genetic Conditions
Why I blog
Surviving a Sudden Cardiac Arrest is rare, but sudden cardiac death is not. Sudden Cardiac Death is the major killer of both men and women, and ARVD the major cause of sudden cardiac death in the young. I speak up because others have been silenced by death. Because I believe education and advocacy can help survival rates and quality of life. Because I want to live in hope not fear for myself, for my child, and for all families facing such diagnosis.
The first my family knew of the mishap in our genes was a phone call from the police.
My brilliant younger brother had died suddenly while jogging on campus.
Several years later while out jogging on another university campus I went down, but survived. Making me one of the unusual cases of survival of sudden cardiac arrest.
In both my brother and my case the cause of this massive heart issue was unknown. After much assessment they said I had idiopathic ventricular fibrillation aka we have no clue.
Fast forward 17 years I’m still here. I have an AICD implanted, I have a family and a very full life. I found out, just a few months ago, the cause of mine and my brother’s events – Arrhythmogenic Right Ventricular Dysplasia/Cardiomyopathy ARVD/C. I have an autosomal dominant, disease-causing gene mutation of the Desmoplankin (DSP) gene. DSP is a protein that helps structure your cardiac muscle. The mutation I have causes ARVD where normal heart muscle is replaced with fibrous or fatty tissue and the heart can not function as it should. Sometimes this results in interverence with the electrical impulses across the heart causing arrhythmias including sudden cardiac death. As the heart tissue is replaced the overall function of the heart is decreased. This is a progressive disease and I have passed the DSP mutation on to my eldest child. I am heartbroken that she has the mutation, but determined that we will both have full, fabulous and hopeful futures.