Name: Rebecca Schmidling
Which SADS condition do you have? ARVC
When were you diagnosed? 2012 at age 32.
How are you treated? (Beta blocker, ICD, etc.) ablation in 2014, sotalol and an ICD
How/when were you diagnosed?
I was 32 years old and about 6 weeks pregnant with my second child when I went into Sudden Cardiac arrest out of nowhere. I was shocked twice at the hospital after my heart rate reached 300 And I was in SVT. They had no idea why it happened until I took a genetic test for ARVC. I then had an ICD implanted at 5 months pregnant.
What has been the biggest challenge you’ve faced in living with your diagnosis?
Not being able to work out, run, play soccer, chase my kids around. And all the limitations ARVC causes. It’s an unbelievable disease that gets worse when you do anything high endurance. It’s really a crazy type heart disease. And mostly…that I passed both of my genes down to my son. That has been the hardest to accept. We keep him out of high endurance sports as well and to think that he will have to watch out for this the rest of his life or possibly develop it (50/50 chance)…it’s gut wrenching.
What is one positive thing that has come out of your diagnosis?
The people I’ve met. The wonderful doctors at St Luke’s Hospital in Wisconsin…the phenomenal doctors at Johns Hopkins that we’re able to perform my tricky ablation…and the overall thankfulness of still being alive! And my baby surviving. Things could have turned out much different.
What encouragement or advice would you give someone who has just been diagnosed with your condition?
Get in contact with Johns Hopkins immediately! Their ARVC research is amazing. And so are all of the doctors. They also encourage you to talk to other patients with ARVC which has helped a lot. And overall just be an advocate for yourself and ask a lot of questions! Knowledge really is power. Also know that you can live with this. As hard as it is some days…you can still live a very full life!
What does your day-to-day life look like?
Lots of time with family, full-time job, vacations. But it’s also some days of feeling really tired or dizzy. Having arrhythmias and out of breath. But each day is different and I still do all that I can!
What are your favorite hobbies and activities?
Reading, spending time with my husband and children, walking, baking.
How has the SADS Foundation been helpful to you?
It has been helpful to read all of the stories I have looked through. To know the happy and the sad ones and to appreciate how precious life is! But to also advocate for AED’s and CPR. And To know that I’m not alone.