Survivor 2017 Week two


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Talk It Out Template Blue Heart Scraps https://store.gingerscraps.net/Talk-It-Out-Template-Pack.html


Today I feel powerful. It hit me that my attempts at patient advocacy are really working. I took on the role as a patient advocate because I never wanted anyone to feel the way I felt, alone. I didn't want anyone else to needlessly go through what I had. I wanted to step in and help others be informed. Knowledge is power after all. If I can just help save one life it will make what I went through worthwhile. In a way maybe I already have. Because I survived, because I fought to survive, I was able to be properly diagnosed with a very rare congenital heart condition called Long QT. Because I was diagnosed my family could be tested. That testing discovered my daughter had inherited the condition from me. Further testing proved I had inherited it from my Mom. Then further testing proved my two sisters inherited it as well. I may very well have already saved a life, being diagnosed and treated is a huge step towards safety. I still strive to make a difference. I admin a number of patient support groups on Facebook. Groups including Sudden Cardiac Arrest Survivors, Long QT Type 5, and Living with the S-ICD. Administration is more than just admitting people, and policing drama, the main purpose is to ensure accurate, factual information is available to all members, to make sure no one ever feels alone, to ensure that members learn it's acceptable to speak up for themselves, that they need to be their own advocate. As a patient advocate I'm always trying to get the information out there about my rare disease. I do everything I can to inform people it exists. I've most likely explained the difference between a cardiac arrest and a heart attack a thousand times. I've explained congenital is in my genes that there is no cure. I've explained countless times what long qt is (an electrical fault in the heart). I think the most powerful thing I do to help get the word out is talk
freely about my experiences. I did just that one night in a Facebook group. A digital designers group. That conversation led to some private messages. Those private messages led to a digital kit release that included Long QT Syndrome and cardiac arrest. I cried when I saw it. This intangible, unmeasurable thing, that destroyed my life as I knew it, was there, it was concrete, it was real. I feel powerful. I know my patient advocacy is making a difference. I will always take time to help others understand. It will save someone's life one day.