Susan Jones' blackouts were a mystery until one killed her son. Susan suffers from a rare congenital heart condition – Catecholaminergic Polymorphic Ventricular Tachycardia.
"My children and I have suffered from blackouts since we were kids. Our condition remained undiagnosed until one of these blackouts killed my son Raymond while he was surfing. Not a day goes by that I don't miss my son and think about the high price we have paid.
Losing my son tore a piece out of my heart. Ray's heart is still beating inside his sister Sharron and me. Diagnosis and treatment changed our lives. If we'd had it earlier, it could have saved Ray's.
He was only 26. Sharron and I were referred to the PA and diagnosed with CPVT. Today, we both have implanted cardioverter/defibrillators, which monitor and regulate the heart rate, and help us to get on with our lives. Sharron's defibrillator has restarted her heart 14 times in the five years she's had it.
CPVT affects otherwise fit and healthy people. It causes the heart to beat dangerously quickly under physical exertion or emotional stress. This can result in dizziness, blackouts and sudden death. It is often mistaken for epilepsy and diagnosis and treatment are notoriously difficult. Many sufferers aren't even aware there's a problem, until it's too late.
We are now awaiting the diagnosis of Sharron's baby Jai. There's a 50-50 chance he'll have the condition. Heart Disease has taken a severe toll on my children and I, hopefully research can make a difference."
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