Name: Danielle
Age: 38
Which SADS condition do you have? CPVT
When were you diagnosed? Oct 2017, after 20 + yrs of misdiagnosis
How are you treated? (Beta blocker, ICD, etc.) ICD placed in November 2017, nadolol and flecanide
How/when were you diagnosed?
I had a severe SCA that my husband thought I wouldn’t come out of. Dr decided to try another ablation. He injected me with adrenaline before putting me to sleep and the monitors lit up like Christmas. He sent me to a cardiac EP specialist who confirmed diagnosis and said I had not been fainting but going into cardiac arrest. I had an ICD placed that week and additional medications were added. Genetic testing was also ordered then.
What has been the biggest challenge you’ve faced in living with your diagnosis?
Accepting that my best is enough, getting over the guilt of passing it on to my child, and learning to live a more stress-free life.
What is one positive thing that has come out of your diagnosis?
I’ve learned more than I ever thought possible and have educated others about my condition. My genetic mutation was added to the registrar after my daughter and I were added to the list.
What encouragement or advice would you give someone who has just been diagnosed with your condition?
You can live, you just have to accept that you can’t do everything you once did.
What does your day-to-day life look like?
I work at an office a couple days a week. On my off days, I do a lot of rest and recovery.
What are your favorite hobbies and activities?
Reading, watching movies and going to the beach