I’ve been invited!

I’m sure you have all heard about the World Summit for Brugada Syndrome in Milan, Italy happening in February 2017? I hope you have! It’s in regards to an ablation that can reverse ventricular fibrillation in Brugada Syndrome! The pioneer doctor of this procedure is Dr. Carlo Pappone. His secretary reached out to me and said he has invited me as a guest to fly, stay and be a part of the World Summit! Can you imagine!!? I am so honored! Shocked really, that Dr. Pappone would personally invite me to see what this miracle is all about! I haven’t been asked to go as a patient as I haven’t (luckily) experienced V Fib yet. I’ve been invited because I try to be a very visible aspect of the online Brugada Syndrome community and despite me trying to stay mostly anonymous, they have noticed me. I guess I’m more ‘visible’ than I thought haha!  But…don’t hate me…I had to say no. With such a large family, I wouldn’t want to go without all my children and my husband along for such a historic event. It would just be too difficult to travel either alone or with my family so sadly I had to say ‘next time.’ Anyhow, I just wanted to share the news! Feel free to read up about the World Summit on their website http://brugadasyndromeablation.org

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6 Comments (+add yours?)

  1. Daniel
    Nov 28, 2016 @ 02:37:34

    I”m a 29 y.o. male that just found out that I have BrS after taking Flecainide for afib before heading to the ER. I was lucky to have had the Flecainde to unmask my otherwise normal EKG. I’ve had episodes of afib in the past, but hearing about BrS is destroying my world. I’m asymptomatic, I’ve only had PVCs, SVT, and Afib. I thought that since you have been dealing with this for so long that you could help with some of my questions. What do you think of wearing a LifeVest instead of taking on all the risk of getting a ICD? Kinda try to wait it out the next 10 years and hope science figures it out. Do you thinking the risk of an ICD is high? Next, I’m very active. I love to run, spend almost everyday in the gym lifting heavy wights, or doing anything that really get me up and going. Is that all over if I get an ICD, or is it over now that I have BrS? I’ve read that fever/strenuous exercise can cause an episode. I’ve also seen that alcohol is on the list of possible drugs to cause an event. I live in the south and it seems like everything is a reason to eat and drink. Do you drink? Have you read anything different? Do you feel like they say that everything causes a BrS event to be more like a safety net, or should it be a strict guide to live by? Lastly, My wife and I have not had kids yet, what your opinion on having kids knowing what you know now?

    Reply

    • AliciaB
      Nov 28, 2016 @ 08:57:14

      Hi Daniel! Just take a deep breath! I can try to answer some of your questions but keep in mind Im not a doctor and it’s best to address all these issues with your Doctor 🙂 I personally would not want a vest. I think it would be cumbersome and for ultimate protection you would need to wear it 24/7. As much as I hated my ICD at first, I now take comfort in knowing it is there and I don’t have to worry about protection. Trust me when I tell you, eventually you will forget it is even there. There are risks with an ICD which your Doctor could explain but the bigger risk is cardiac arrest from Brugada, and sometimes there are no second chances. There is a new ICD called the S-ICD which isn’t wired into the heart but around it. You have to speak to your doc to see if you are a candidate for it. As far as exercise, that is random and depends on you personally and your restrictions. There can be lifting restriction with the ICD but Ive spoken to plenty of people who do all sorts of things including running marathons and rock climbing lol! It is true a fever, or any huge increase in body temp, can bring on an arrhythmia, so that is something to be very careful about. Alcohol is listed on brugadadrugs.org as a substance to avoid. It can cause arrhythmia and I do know of people who had cardiac arrest from alcohol. Yet I know some people who have 1 or 2 drinks here and there. This is up to your Doctor as well. I don’t drink but when I have had a drink here and there, I can say I didnt feel well. I would follow the rules beyond just a safety net because Brugada is fatal. Its something that is better to be worked with, rather than against it. As far as children, I have 6 children. Yes, 3 have the gene but that is not an indicator that they will ever have an issue with it. My personal opinion is that having a child is fine. My father died young from Brugada, but my grandmother who supposedly had it lived to 86 and ultimately died form lung cancer. My point is Brugada is a gamble. But I personally would not decide to not have kids from it because kids can still lead healthy, happy lives 🙂

      Reply

      • Daniel
        Nov 28, 2016 @ 17:12:57

        Thanks so much for all the feedback. I’m so glad someone is sharing their experiences with others in the BrS community. Just knowing we aren’t alone helps ease the pain of having BrS. Once again thanks for taking time out of your day to help me with my questions and struggles with BrS.

      • AliciaB
        Nov 28, 2016 @ 20:29:40

        You are very welcome. Email me if you ever need to talk brugadagirl@yahoo.com I’m more than happy to help 🙂

  2. Brandon brown
    Nov 01, 2016 @ 21:41:37

    That’s sooo awesome. Sucks you can’t go though….. maybe…. I can be Brugada Boy and go for you!!!! LoL

    Reply

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