Name: Dawn Barnett
Which SADS condition do you have? Long Qt Syndrome 11
When were you diagnosed? 2005
How are you treated? beta blocker, ICD
How/when were you diagnosed?
2005 after heart arrest and medically-induced coma for 7 days. Identical twin died in 1948 when we were hospitalized for pneumonia. At that time doctors just said she had a “weak heart” and Long QT was not known about until 1992. DNA study was done a couple of years ago and found variance identified in the AKAP9 gene (LQT11) with a mutation occurring during the egg splitting. We were identical mirror twins.
What has been the biggest challenge you’ve faced in living with your diagnosis?
I’m very active and keeping hydrated has been the biggest challenge. I play golf 4 days a week and during the hot months is the most challenging, especially on the greens which can be like an oven.
What is one positive thing that has come out of your diagnosis?
My ICD has saved me at least 6 times since 2005. When I had the heart arrest in 2005 I almost died but the EMS got me to the hospital within 10 minutes and I was put into a medically induced coma which I came out of 7 days later. ICD was implanted and although I have had many arrhythmias not bad enough to set it off it has saved me at east 6 times when they were. I take better care of myself by wearing a Fitbit and I stop playing golf if I start getting dizzy and my heart rate goes above 100. Have had an arrhythmia before (showed up on record when I went to the EP’s office the next day) when I got dizzy and my heart rate was above 100 and doctors told me had I continued playing I would have gone into heart arrest.
What encouragement or advice would you give someone who has just been diagnosed with your condition?
Drink plenty of water, watch your blood pressure and heart rate, be careful not to get dizzy and if you do hydrate more. I have lived a very active life for 13 years since my diagnosis.
What does your day-to-day life look like?
Very active, play golf 4 days weekly, on several boards of several golf leagues I belong to so go to meetings. Marshall two days monthly at local golf course. Travel frequently to see grand children either by driving 6 hrs away or flying across US. Manage home with husband and two golden retrievers. Spend 2 hrs daily on social media for support group I moderate.
What are your favorite hobbies and activities?
golfing, genealogy, am admin/moderator for twinless twin support group of with 3,700 members on Facebook
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