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My experience with Long QT Syndrome began at about age 7, or at least I think it did. One of the funny things about this condition is you don’t know for sure if it caused you to lose consciousness if you don’t have an EKG or some other kind of heart monitor hooked up to you.

I was getting my Frosted Flakes out of the cabinet one morning, and I felt strange. The next thing I knew I was laying on the floor in a pool of my own urine. My mom took me to the doctor, saying she thought perhaps I was diabetic and I’d have to start eating the vegetables I hated at the time. Fortunately, I thought, the doc said nothing was wrong. Childhood went on as usual.

In my 20s, I raised my hand to answer a question in Evidence class. I wasn’t nervous, I wanted to answer the question as I had done many times before in many classes. As the professor called on me, I felt strange. I woke up on the floor, this time dry, with a fellow student who was a nurse standing over me. Friends summoned Dr. Bruce, another friend in my law school class who was an emergency room doctor. An ambulance took me to the college “quack shack,” which opined just as my childhood doctor had.

Law school life did not proceed as usual after that experience. I began experiencing panic attacks, thinking I was going to pass out and die. I would want to scream out in inappropriate places. Over time, the panic attacks subsided a bit, but would still come back many times for the next 25 or so years. What had caused my faint in law school class with no apparent explanation?

I think I got my answer on a weekday morning many, many years later. As I, my wife, A (I’m going to try to keep a little of my family’s privacy), and 11 year old daughter K looked on, my 9 year old son W appeared to have a seizure while on the computer before school. I caught him before he hit the floor and took him to his bed. He began to cry. My first thought was that he had epilepsy, perhaps of a form that was aggravated by the fast animation of video games that I had read about recently. W would not like having to give up video games-that would be worse than having to eat yucky vegetables.

We called our doctor, and she said her rule was to send all first seizures to the emergency room. Nothing was uncovered there, but we were then referred to a neurologist. The neurologist went through a battery of tests, again uncovering nothing. He had one last test for W-an EKG.

I looked at the print out of the EKG over the nurse’s shoulder, and saw a notation that said “Borderline Prolonged QTc.” The nurse took the EKG to the neurologist, who sent her back to tell us that they needed to send it to a pediatric cardiologist for evaluation. Somehow, I knew there was going to be more to the story.

I went home and checked prolonged QTc on the Internet, and the pieces of my history of faints fell into place. I just knew that I had long QT, and had passed it to one of my children. The pediatric cardiologist, who had just moved to town 9 months earlier, confirmed the next day that W had a very prolonged QTc interval, not a borderline one.

I was, in a strange way, relieved. I now had an explanation of my history, and I could do something about it. My anxiety was replaced with a fierce determination to make sure my children could live with the long QT I passed to them. W would test positive for Type 2, as would both K and I later. W’s seizure turned out to be a gift which I believe eventually saved his sister’s life. I will say that K went on to pass out during a law school class.

I’ll stop our story here for now. We have shared many parts of the journey families can have with this odd medical condition, one in which the vast majority of patients usually show no outward signs. Insurance issues, how much activity to allow, defibrillators, ICD decisions and complications, school problems, medication issues, new drug trials and severe anxiety disorders are among the situations we have shared with a wonderful community of fellow long QT patients, families and friends. Along the way, we have met some fantastic people we would not otherwise know due to long QT. I hope to blog again in the future about some of these subjects.

My family and I, when all is said and done, are quite fortunate compared to many who have been affected by this condition. None of our immediate family has suffered a sudden cardiac arrest or died from this disorder or its complications. We have lived as well as we have with long QT because of the relatively recent development of an understanding of the condition, involving thousands of doctors and researchers. There is still more we can do to keep long QT and other SADS conditions from taking more lives in the future.

I so value the experience of those who have lost a loved one, had complications from a sudden cardiac arrest or suffer from complications from treatment, as they make the rest of us remember that we must keep working to understand this condition on the days when we incorrectly think our condition might never affect us again. They also teach us in a way others cannot about the tragedies we will inevitably face in life and how we can face them, even if ours end up being different ones. While I would prefer this condition did not exist, I embrace it because it is an inseparable part of the family I love, the life I love.