A Bit of Info on the World Summit for Brugada Syndrome

I’ve mentioned the World Summit on Facebook and Twitter and there seems to be some questions. I to have a ton of questions. Being I am only a layman, with no medical expertise whatsoever, I decided over the last few months to do my own research on right ventricular ablation to help reverse BrS. I didn’t get too far, as I am only a patient. But I have a rough idea of what is going on. I’ll share with you what I gathered, but bear in mind, you should do your own research. I’m in no position to speak as an expert on the WS or ablation or anything. I speak as a patient who has hope in her heart (literally) and I want to share it with my readers. What I’ve gathered is this:

–Only certain patients are eligible for the ablation. You have to have repeated ventricular fibrillation to be a candidate.

–There is still much research to be done to perfect it and assure it is safe. From what I have read there are definite dangers to an ablation.

–It seems most the research is done in Europe, specifically in Italy.

–It is not being spoken of as a cure but rather a way to stop ventricular fibrillation. This confuses me because stopping VF, in turn stops cardiac arrest, right? So wouldn’t that be considered a cure? I’m sure I am wrong…

–When patients with a classic Brugada pattern on their EKG had the ablation done, the EKG reverted back to normal! I have an abnormal EKG 24/7 and have for 15 years. The thought that it can be totally reversed, which may decrease my risk, is HOPEFUL!! But I haven’t had VF so I wouldn’t be a candidate anyhow, I guess. And it seems it reversed the likelihood of VFib or perhaps stopped it all together ?

–Do the patients still have bouts of VF after the ablation? Do they need an ICD still? I don’t know. Being a patient is frustrating because we aren’t entitled to knowing all this info.

Thats about it! It’s not much info but I know enough to have hope for the future and for my kids and for all of us. I just wanted to share 🙂

You can stay informed by visiting http://brugadasyndromeablation.org

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