Name: Susana Rodríguez
Which SADS condition do you have? Long QT Syndrome
How are you treated? Beta blockers + always carry my AED to training.
How were you diagnosed?
When I was 28 I started to have abnormal findings in my EKGs, like inverted and notched T waves. As I race at elite level sports in triathlons and athletics, I do heart control every year so when this started I was asked to do ECo image studies and an MRI. Finally in December 2019, in my last stress running test, very abnormal QT prolongation was detected during effort and 4 min recovery. I was diagnosed with Long QT Syndrome finally at the end of January. I feel lucky to know this because at least there is an option for prevention. I only had some tachycardia episodes without other symptoms.
What has been the biggest challenge you’ve faced in living with your diagnosis?
The hardest part for me was to realize that as an athlete, what I love most could be a potential danger for me. Receiving this diagnosis as a para-triathlon world champion and on my final build up for Tokyo 2020 Paralympic games (I have a very severe visual impairment) was stressful. I also found it hard to start beta blocker treatment because although it is good for me, it has given me some side effects such as dizziness. The first days I carried my AED to training it was hard to add this gear to my equipment because as a doctor I really know what sudden cardiac arrest means.
What is one positive thing that has come out of your diagnosis?
I have improved a lot in choosing which my priorities are in life and I feel good that I know about the condition so that I can take care of my body. I now understand the need of resting and listening to my body as an athlete when I feel tired. Beta blockers have made me feel very low in training but with time they have made me have a stronger attitude towards effort. As a doctor now I realize more how important is giving clear information to patients so that we can help them in decision making. I feel pleased that my cardiologist Dr. Alvarez was as clear as possible and listening to her was very helpful.
What encouragement or advice would you give someone who has just been diagnosed with your condition?
I think the best advice to give to someone in a similar situation is think on a daily basis and don’t stress about the future. Do things you enjoy and don’t be ashamed of having this condition. We can live an almost normal life.