Name: Samantha Wilder
Which SADS condition do you have? Long QT Syndrome, Type 1
When were you diagnosed? 2002
How are you treated? (Beta blocker, ICD, etc.) Beta Blocker after refusing implantation at 12 to continue playing contact sports
How/when were you diagnosed? A series of escalating events in middle school while going for school records. The first time was chalked up to dehydration, but the second time my pulse was only 60 after running a sub-7 min. mile and blacking out finishing my last lap while living in Wisconsin. I’d also had a “seizure” after being scared four years earlier in Virginia. Thankfully, I somehow ended up at Mayo Clinic sitting across from Dr. Ackerman and have traveled back for my visits ever since.
What has been the biggest challenge you’ve faced in living with your diagnosis? I’m approaching two decades with my diagnosis at such pivotal life phases, so I think it’s shifted. As a high schooler, it was comparing myself to the athlete I was before beta blockers coupled with the exhaustion; in college, it was first dealing with depression and trying to determine how much was medication related and weight gain from a suppressed metabolism; as an adult, it’s been the constant insurance battles; anxiety and uncertainty — whether it was his sentinel event or a heart attack — from losing my Dad suddenly who I inherited LQTS from and never got treated; and receiving drugs to avoid despite clearly instructing providers of my restrictions because they didn’t take them seriously.
What is one positive thing that has come out of your diagnosis? Not waiting, but always telling people how much they matter and encouraging them, however I can, because I realize no amount of time is guaranteed.
What encouragement or advice would you give someone who has just been diagnosed with your condition? Deep breath. I thought my world was over too, and yes, there will be difficult days or even seasons. Not today or tomorrow, but some day you’ll see we’re the lucky ones that got a diagnosis to readjust and be more intentional. We’re still here, which means we were meant to live. Not just exist, but live and thrive — our diagnoses are only a part of who we are. James 1:2-4.
What does your day-to-day life look like? I moved at the start of the year, so pretty quiet while settling in between working long hours, spoiling my dog, and slowly picking running back up.
What are your favorite hobbies and activities? Cooking, learning as much as possible (book club, podcasts, etc.), combating social injustice, cultivating community, and exploring the world, even went on my first solo trip last year!
How has the SADS Foundation been helpful to you? I rely on SADS Foundation as a great, trustworthy source of information. Last Fall was my first conference, and I wish I’d gone sooner! I can’t begin to explain how good for your soul it is to meet other people that just get it.