Living with CPVT (life threatening heart condition)is rlly difficult 💕

[Ellie_]

I have a life treating heart condition called CPVT , it came to light when I was 13 and now I’m 16. It’s hard to manage but I’m trying really hard to get through the difficult times, these couple of years are rlly important because I’m going through puberty so they have to do a lot of traces and tests to get it right.

[Calliope153]

Hi Ellie - you've come to the right place for a bit of advice and support. You might like to watch the BHF video called Shannon's Story

bhf.org.uk/informationsuppo...

Watch Shannon tell her story about being diagnosed with CPVT.

She also has a blog.

I hope this is of interest to you. You will have down days but family, friends and doctors will help but you do have to tell them how you feel. GCSEs maybe a pain but they open the door to other things so stick at it.

Good luck.

[Milkfairy Heart Star]

Here is Shona's story

I hope you find it helpful.

blog.bhf.org.uk/what-happen...

Do they have a young person's support group at the hospital you attend?

Shona has a very inspirational blog so perhaps have a look?

shonalouise.com/?m=1

[jimmyq]

Can you tell us more about CPVT so that we can work out how to help you? You are doing very well so far!

[CharlesL]

Ellie Give it time...

C

[Kizzie54]

Hi Ellie, I too have CPVT. I find very limited and simplistic info on the condition . It seems very little is known compared to other types of arrhythmias. Firstly, be safe, make people aware of your condition. Enjoy life sensibly. Do you have z defibrillator fitted?