About

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

ARVD

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.

My story
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.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s