by Rachelle | Jun 15, 2018 | Connecting with others, CPVT, HCM, ICD, Long QT Syndrome, Research, Sports/Exercise, Sudden Cardiac Arrest, Timothy Syndrome, Uncategorized
Seeing the doctor is always stressful. It’s even more so when you’re from out of state (like me) or even out of country. It can be very overwhelming. I admin a group and we get a lot of questions from people asking what it’s like, where to stay,...
by Aimmy | Aug 17, 2017 | Uncategorized
A list of abbreviations commonly used in cardiology. DFT- Defibrillation threshold testing VT- Ventricular tachycardia VF- Ventricular fibrillation AF- Atrial fibrillation EKG/ECG- Electrocardiogram PVC- Premature Ventricular Contraction PAC- Premature Atrial...
by Aimmy | Jun 29, 2017 | Uncategorized
Questions to ask at ep/cardiologist appointments: Why am I consider at this risk level at the current time? Will my risk level change overtime? Or will the risk level remain the same all the time? What are the treatment options? Why am I being started on this...
by Aimmy | May 26, 2017 | Uncategorized
My story begins when I was 11 years old. When I was 11 years old, I had passed out while walking up a flight of stairs in school. I did not know what had happened until I got to the ER in the hospital. I was later told CPR needed to be perform on me. At, this time...
by Jasmine Wylie | May 12, 2017 | Uncategorized
Are you a patient affected by a SADS Condition? Are you a parent or sibling or other family member of someone affected by a SADS condition? Are you a doctor, genetic counselor, researcher, or other professional who would like to help contribute to a resource for SADS...
by Rachelle | Apr 29, 2017 | CPVT, Uncategorized
If you haven’t already I want you to take a look at that photo. It’s special. Not because of what’s there, but because of what isn’t. Honestly this is a once in a lifetime photo, because the event in this photo changed my life forever. Have you...