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Name:  Cian Bennett

Age:  13

Diagnosis:  Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT)

Age of Diagnosis: 13

What led to your diagnosis? 

I had a fainting episode at home and my pediatrician sent me to a cardiologist.  My first visit was okay and they thought it was just vasovagal syncope.  My cardiologist wanted me to follow-up the next year and at the follow-up he decided he wanted to send me home with a holter monitor because he saw a slight change on my EKG that was still considered normal but was different than the prior year.  My holter monitor results showed PVC’s and arrhythmias so he scheduled me for a stress test.  The stress test was very abnormal and showed polymorphic ventricular tachycardia during exercise.  I was then sent to a cardiac electrophysiologist.

Where you involved in any sports or activities that had to be modified or stopped completely when you were diagnosed?

Prior to my diagnosis I was very active.  I love sports. I attended basketball camps, played little league baseball, and played basketball with Upward Sports for many years. When I was diagnosed, I was in 7th grade athletics at my middle school and was one of the managers for our basketball team.  

After my diagnosis my doctor restricted my physical activity and I am no longer allowed to participate in competitive sports.  I can only do light physical activity with supervision.   I would love to still be able to participate fully in my athletic class at school and try out for sports at school such as basketball.  My doctor says I can still manage sports at school but not play or compete.

What are some of the things that helped you adjust?  What did you do that helped?  Did you develop new interests, if so what were they?

I always loved to play on the X-box and PS4 before my diagnosis but now that I cannot be very physically active, I play on these so much more.  I love Fortnite, Road to the Show 20 and NBA2K.

What were some of the hardest things about being diagnosed?

The hardest thing about my diagnosis is not being able workout and play sports.

What are some of the good things that have happened to you because of your diagnosis and what are some of the things you have learned?

Because of my diagnosis, I met a new friend through the SADS Teen Chat Zoom that I now play Fortnite with on my PS4.  It is nice to be able to talk to someone who has a similar diagnosis as me. 

What was the best thing your friends did to support you?

My friends understand that there are some things I just can’t do anymore but there are other ways I can still be involved in athletics and sports. My coaches at school allowed me to stay in athletics class even though I was very restricted. It made me happy that I could still participate and stay in athletics with my friends.

Medication:

I don’t mind taking my medication because I know it is helping me.  I haven’t really had any issues taking it.  I take Nadolol and Flecainide.

If you could give encouragement to newly diagnosed children or teens what would you tell them?

I would tell anyone diagnosed with my condition that even though I am limited with physical activity and sports, there are other things I can still do.  I am also glad there is medication that can help.  My mom tells me that I just have to think a little differently about things now. I may not be able to do all I could before but I can still do other things I enjoy and I try to focus on that.

Quality of Life:

Physical:  7

Mental:  10

Overall:  10