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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My featured interview with EP Lab Digest 

I was interviewed by the magazine EP Lab Digest about Brugada Syndrome. I am so happy to share my personal experience with them and have it published. Here is the link for the article for anyone who would like to read it. Enjoy!

http://www.eplabdigest.com/articles/Patient-Perspectives-Interview-Alicia-Burns-BrugadaGirl

Im not thinking about it!

It’s been 3 years since diagnosis and my ICD and something dawned on me…I’m not thinking about it as much as I used to!! That is an enormous milestone! When you can go on living and not think about Brugada Syndrome, it’s freedom. Granted, I think about it here and there,as far as precautionary, but it’s not as much fear as it used to be. I ride horses. And right after diagnosis it took me 9 months to get back on horse back. And when I finally did, I was scared to death. I kept thinking all these frightening thoughts, which made me not want to do it. I took a break from it. I gave up an activity that gave me joy and happiness because of fearful thoughts. That is not living. I stopped “doing” in order to “think”. We can’t be prisoners in our minds and bodies. It’s not healthy in any way, shape or form. A few weeks ago I started riding again. And I’m having a blast. I look forward to going and learning and love it. And yesterday it dawned on me that not ONCE in the last few weeks did I think about Brugada while riding. I listened to my trainer, enjoyed the horse and the scenery. This is huge! It took 3 years but Im actually doing what I used to do without fear around my neck like a noose. I wanted to share that with you because I want you to know, life will be normal. Sure, we will always have to think about it, but on a healthy level. Not on a level where it controls you and steals your life away. All my readers have seen me wrestle mentally the last 3 years. I’ve written some very sad, dismal stuff. Some of it is down right frightening, especially for someone who was just diagnosed. It was never my intention to scare a single soul. Don’t forget this blog is MY experience, MY diary, MY journal. It doesn’t mean you will experience anything that I feel or think. It’s only a glimpse into MY personal life. With that being said, all my readers will realize that for me to be able to do my favorite hobby, and smile and have fun doing it, is an AMAZING milestone! I hope all of you HAVE reached it or WILL reach it! You WILL reach it!!

A Different Perspective

Hello everyone! It’s been awhile since I wrote a post! But the reason for that is it is not healthy for me to think and write about Brugada Syndrome everyday. As it is not healthy for you to read about it everyday either. But once in while I have something new to say or vent about, even if not often. And today I was thinking about how busy I have been. That is one of the reasons I haven’t been writing. Im back in college getting a certificate in Genealogical Research, one of my favorite hobbies! And I am also back in the equestrian world riding horses and tossing around the idea of getting my own horse. Anyhow, this gave me an idea for a new post.Let’s have different perspective, even if it’s only for a month, a week, a day…what can we do now that we have a second lease on life? We tend to talk about what we CANT do with Brugada. But those of us who were lucky enough to be diagnosed, for lack of a better term, get to live. Life has been renewed. We have our treatment and defibrillators and life goes on. Has it stopped for you? Has life just ended and now you are afraid to do anything? Look at it this way, would you lease a new car and never drive it? Why pay for it to sit in your driveway? Why have it if you won’t drive your car? Well why get an ICD if we just sit around and worry about negative things? This is a hard concept, I know. And one that changes daily. And that is normal,believe me. One day we are on top of the world and living life. The next day we are hidden away in our rooms full of fear.Thats okay!! As long as we don’t let it happen every single day. Be sure to LIVE in your Brugada journey. The diagnosis, although it seems like a death sentence, actually saves lives. After all my father would be here if he knew he had it right? So let’s try to look at this all with a new perspective! Tell me what you will do now that you know your are protected with your defibrillator. Are you in sports? What hobbies do you have? Have any vacations coming up? What about little things you can do daily to bring some sunshine back into the picture. I love my genealogy, horses, I garden, I love learning several languages (right now I study Italian and German).I ride my bike, walk my dogs, play with my kids. All sorts of stuff. What can you start today, even if it’s little, to live your life? I encourage you all to do it. Share your ideas and plans with me as it lifts everyone up! You can even email me if you want as that seems to be everyone’s preferred method because privacy. I just like to hear the success stories of people who are not beaten down and broken from Brugada Syndrome. I’m not!

Happy Holidays

Hi everyone! I wanted to wish you all a Happy Holiday in advance! I will be enjoying the holidays and will be disconnecting for a little while. I hate to bog myself down worrying about Brugada during this very special time of year.Rest assured, I will check all my messages, emails and comments at the New Year.I will answer everyone as soon as possible the first week of January! I just wanted you all to know Im taking a little break so you don’t think Im ignoring you. I will be in touch after New Years! Stay, safe, healthy and well!

Donate to SADS in my father’s memory…

I wanted to share something special with you that I just created. It is a Memoriam Fund in honor of my father where you can donate money directly to SADS (Sudden Arrhythmia Death Syndromes) Foundation for research and support for Brugada Syndrome. If you ever wanted to donate a little something to SADS I would REALLY appreciate it if you do it through my fathers fund. I don’t get a single cent. Nothing goes to me, I promise. Its all for SADS. Its just a way for you to see his face, read a little story and do something that would give me such joy at Christmas. Not only does it give me joy that money is well spent but it makes me happy to know many will think of my father at Christmas time. If you cant get directly to his fund you can find him on page 5, Robert De Filippis. Go to Online Community on the right and click on In Memoriam DONATE IN HIS HONOR NOW

Possible support group in NY/NJ area…

There MAY be a possibility that a support group will start in NJ/NY via SADS (Sudden Arrhythmia Death Syndromes). Of course we would need enough people in the area to participate to get something going. How many of my readers are in this area and would be interested? You can message me on Facebook,email me at brugadagirl@yahoo.com or comment here. Please pick from one of the 3 options about which one you prefer A) A larger public support group B) A smaller setting like one on one for coffee or lunch C) Support groups aren’t something you are interested in

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