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Shelly Ryan’s Story

NJ

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SHELLY's Story

My niece Hunter was your average 6 year old child, full of energy and life. Who knew a call from the school nurse would change her life as she and we knew it. The nurse said Hunter was very tired and she couldn’t keep her awake. We didn’t know why, she had gotten plenty of sleep. The nurse asked us to come get Hunter and take her to the doctor; she had a weird feeling about it. Once at the doctor, they ordered all kinds of tests, most importantly an EKG. The doctors told us not to worry about anything, kids get tired sometimes. Weeks went by waiting for test results, and then the call came “I think you need to take Hunter to a cardiologist.” It was the cardiologist who diagnosed Hunter with Long QT Syndrome and referred us to an electro physiologist. Just 3 months later she had a pacemaker implanted. She is now 13 years old and will be going in for a new pacemaker in the summer of 2010.

Long QT Syndrome is an abnormality of the heart’s electrical system, the function of the heart is entirely normal. The electrical problem is due to defects in the heart muscle cell structures called ion channels. These electrical defects cause people with this disorder to have a slower than normal heart rhythm which leads to sudden loss of consciousness and may cause sudden cardiac death. The symptoms typically occur during physical activity or emotional upset.

After research we learned that Long QT Syndrome is hereditary and can be passed down through generations. Every member of our family was ordered, by Hunter’s doctor, to have EKG’s. Three members of our family were found to have this heart disorder, I am one of them. I have lived 37 years with this disorder that I never knew I had. When I was a child I used to pass out all the time. My doctor told my parents I was having temper tantrums and to just let me be. I thank God that I am here today. I also take beta blockers and see my electro physiologist every 6 months for an EKG and stress test.

We hope there is one thing you take away from our storyhellip;if anyone you know has frequent syncopal episodes please get an EKG. This is the only way to detect this silent killer.

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