Long Q-T Syndrome, Genetics, and Pregnancy

How can a mother, grandmother, and great-grandmother -- determine how to help families like her own? Why would a woman make it her mission to help others with an invisible illness? What can we learn from such a woman?

Jackie Renfrow thought her family had a history of epilepsy. After losing her son Jimmy in 2000 and her daughter Crissy in 2002, she was desperate to find a way to save her two baby granddaughters. It wasn't until her own mother started fainting and having irregular heartbeats that she finally got answers. Emergency doctors performed an electrocardiogram (ECG) and promptly diagnosed her with Long Q-T syndrome. Jackie and her granddaughters Alexis and Jessica also had an ECG and they were diagnosed with the syndrome as well. Jackie has since started a chapter of the Sudden Cardiac Arrest Association in Indianapolis. She works with scientists, doctors, parents, and others to promote awareness of sudden cardiac arrest and access to defibrillation and treatment. In honor of her children and grandchildren, she works to spread awareness of Long Q-T syndrome in order to help other families prevent the loss of their loved ones.  

In this episode, Jackie talks with Anna about what she has learned in living with Long Q-T Syndrome and seeing it affect generations of her family.

Link mentioned in this episode: 

Jackie's first appearance on "Heart to Heart with Anna" -- https://www.buzzsprout.com/62761/398945-seizing-the-day-with-jackie-renfrow

Jackie's appearances on "Heart to Heart with Michael"
Losing Loved Ones to a Misdiagnosis: https://www.buzzsprout.com/123208/1101869
Living with Loss after Loss: https://www.buzzsprout.com/123208/1133858

SADS Foundation: www.sads.org

Sudden Cardiac Arrest Association: https://suddencardiacarrest.org/

Anna's Buzzsprout Affiliate Link (if you'd like to try Buzzsprout for your podcast and get a bonus gift card -- and Anna will, too!) use this link: https://www.buzzsprout.com/?referrer_id=16817

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