My name is Sissy. I was diagnosed with Brugada Syndrome at age 39. I am now 60 years old.
I will begin my story with my daddy. My daddy was very healthy all through his youth. All that anyone could ever remember happening to him was that he had passed out during a parade he was in while he was a teenager. They assumed he had just gotten too hot.
When he was 17, he joined the US AIR FORCE. He married my mother at age 22 and my brother was born when he was 24. Then 2 years later I was born. At this time , Daddy was in his 9th year in the military and had become a Sergeant.
When I was 3 weeks old, my daddy—at age 26–died suddenly. No symptoms, no pain—he just sat down in his chair one afternoon and died. The military had 2 autopsies performed on him and both could only conclude he died from a sudden cardiac arrest. Please note that this was in 1959–long before anything was known about this sudden death disease—Brugada Syndrome.
And so now begins my story.
Growing up my family always talked to me about my daddy. It was very important to my Mother and grandparents that I knew all about Daddy—so I knew his life story by heart-never realizing at the time how vital this information would really be for my own health’s sake. As a young person I was very active and healthy. But I remember at age 15 passing out and waking up in the ER. But after several tests I was told that I was just probably dehydrated—And also when I came to I felt okay.
As I look back there were about 3 other times as a teenager that I would have “spells” as I called them, where all of a sudden I would feel like I was going to black out—and then it seemed to just pass. I had no other symptoms to indicate anything was wrong.
I married at age 19 and then went on to have 2 children and lived a healthy life, hardly ever being sick.
Then at age 37, I begin to have episodes that I would almost black out —and always with the feeling that someone had pulled a plug and it felt as if the life was being drained out of me. It was really scary. These episodes began happening frequently and for the next 2 years I went to doctor after doctor, with each one I was told that since I was so healthy it was probably not physical but probably just nerves. Note that I had never had any nerve problems.
But I knew something was wrong
However, after no real diagnosis after so long a time, and being treated like I was making it up, I just quit going to the doctor—even though I was scared I might die and no one would know why.
Then one night—when I was 39 I had another “spell” and as I felt like my life was draining out of me—I really thought I wasn’t going to survive. My husband insisted that I go to the ER and told the Dr there something had to be done. This time, this doctor really listened and when he did an EKG —he said he didn’t know what it was but something didn’t look right to him and he admitted me to the hospital.
He contacted a cardiologist, that, by the grace of God, saw that something was very wrong. He even closed his office the next day so that he could do some extensive research when he looked at my medical records. This was in 1999–and Brugada Syndrome —had now been discovered. However, at this time very few knew about the disease. But this Doctor had read about Brugada Syndrome and he contacted another cardiologist that knew about this disease and knew exactly what to look for. (This became my doctor and he still is to this day)
Also, he was able to consult with Dr. Brugada, and after close review of my medical history and even obtaining and reviewing my daddy’s autopsy records, I was diagnosed with Brugada Syndrome and also told that since this disease is genetic—with the information they had, they were 99% Daddy had died from the same disease.
I received an ICD that day —at age 39–and I am still alive today.
Also, my 2 children and now 4 grandchildren are tested regularly.
So much more is now known about Brugada Syndrome—however so many are still not aware of it and of all the other sudden death diseases. We must all learn to be proactive with our health and the health of our children!!
I urge all that I can to pay attention to your body. You know when something’s isn’t right- so don’t let anyone make you feel like you are imagining what is going on. Don’t be afraid to speak up and insist that your doctor really listens to you—and if they don’t—then find another doctor that will ! Don’t be afraid to be tested. Help make others aware of these SUDDEN DEATH DISEASES! It is truly a matter of life and death!