I am back home, and I am surprised by the position of your body laying on the grass. I came toward you to wake you up. Your body is inert and your eyes are absent.
Mommy calls our local doctor…
How much reading those testimonies relieved me… everyone with his or her story… my own story was so painful that I was not surprised by what I was reading… I was connecting with my own experience where most of the medical community was not believing me… I had to also tell my story… I had just realized that I was really a survivor…
When doctors did diagnose me with long QT syndrome, my heart did not support the stress. During the night between October 23 and 24, my heart stopped numerous times: 32 times in 24 hours. This was followed by a month in coma, six months in hospital, and twelve months in a special clinic. In that clinic, with an occupational therapist help, I learned back how to live: reading, writing, dressing myself, eating, holding a fork, washing myself, smiling, remembering my prior life, grocery shopping…
My testimonial cannot be compared to previous ones, as I do not have any symptoms: I live normally; I just take a daily beta-blocking medication since November 1994…
03/12/2003 -Isabelle-
He was still in that department five days later [after his birth]. Once, when visiting him as every morning, I noticed that he was hooked to an ECG. I was worried but both nurses and Dr. Poinsot told me that it was just a routine check. It look like that, seven years later, he died from long QT…
12/21/2002 -Melanie-
One day, life overturn, A little fairy, named Melanie, four years old, closed her pretty eyes. I smile to her, she moves into the water, her daddy opens his arms, she takes two steps and she faints! She falls backward, her daddy thinks of a vagal malaise…
I am forty-three years old. Both my fifteen years old daughter and myself have the long QT syndrome… Suddenly while taking a walk on a May Day and stopping under a cherry tree, I had a fainting spell that I able to tell much about…
09/30/2002 -Karen-
I am the second daughter of a family of four. I have a twenty-one years old sister and two brothers eighteen and seventeen years old. My life could have been similar to the lives of my brothers and sister, if only destiny had not worked against me, starting when I was two years old, to make it a living hell…
08/29/2002 -Karine-
My name is Karine. I live in Northern France. I am 24 years old… During my stay in hospital, I learned that I had the long QT syndrome;
10/06/2002 -Marie-claude-
I was first confronted with the Long QT Syndrome without knowing this abnormality was existing.At the time, I was five months pregnant with my daughter Céline
