Name: Tania Cselka

Age: 53

Which SADS condition do you have? Long QT Syndrome

How are you treated? Beta Blockers & ICD

How/when were you diagnosed?

It all started when my husband woke during the night & found me not breathing. He resuscitated me, called an ambulance & I was transferred to Casino Hospital, then onto Lismore Base Hospital. After being resuscitated about 13 times & stabilized, I was flown by the Westpac Rescue Helicopter to Brisbane.

I originally had a pacing wire inserted after I arrested at Prince Charles Hospital (the doctors were talking about heart transplant as they were unsure of why this was happening), but this helped regulate my heartbeat, I then had a pacemaker implanted soon after. It took nearly a month to diagnose at the time & apparently I was one of only about 5 known cases. Since then I have had a second pacemaker & am now on my second defibrillator. 

What is one positive thing that has come out of your diagnosis?

After finding an article in a Sunday paper years ago that mentioned my condition & mentioned Professor Chris Semsarian at RPA who specializes in this disease, I met with him and he has been a godsend to me answering any questions I may have about Long QT Syndrome. he also organized genetic testing for me. The results of which confirmed a faulty gene, which my eldest daughter has also inherited. I have since found out also that my Dad’s brother has also been diagnosed. It took me a long while but with support of family & counseling I was able to sleep again, it was hard to fall asleep as I was scared it would happen again.

What are your favorite hobbies and activities?

I play lawn bowls, do crafts & spend time with family & babysit our 3 granddaughters. We spend a lot of time traveling & enjoying life.

I am so very grateful to everyone who has helped me to survive & live with Long QT Syndrome.