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Review for SADS (Sudden Arrhythmia Death Syndromes) Foundation, Salt Lake City, UT, USA

Rating: 5 stars  

I have been diagnosed with a Sudden Arrhythmia Death Syndrome called LQTS. I had to have a defibrillator implanted in January 2010 when I fainted for the third time in 10 years. Twenty-three months later, the defibrillator saved my life when my heart would not beat correctly. I was actually shocked 40 times that night until medicines kicked in and the defibrillator was able to pace my heart. I also had a younger sister who died in her sleep at the age of 18 in January 1990. She apparently had a SADS condition that was undiagnosed since she didn't have any symptoms, such as the fainting I had. The SADS Foundation has been a wonderful source of information. If I have any questions, someone always e-mails me back right away. I know they can put me in contact with people who have stories such as mine. They are trying to get word out about SADS conditions, signs and symptoms of SADS, ways to save children's lives, having AEDs in public places, learning CPR, and finding the causes for SADS conditions and genetic testing. They keep up with the latest news on all of these subjects and keep in touch with the national and international experts in this field. They have also set up an emergency system to use when they are told about a child or young adult who may have died due to a SADS. They try reach the medical examiner involved, offer support and advice to the family, they help the family get genetic testing, get information and support out to the friends and community, also. I keep thinking it may have helped my family back when my sister died if we had those services available to us. This is a absolutely wonderful Child and Family Non-profit that I support 110%.

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Role:  Client Served