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

Dead Man Walking

Does everyone know what dead man walking means? Its a saying referring to a person who is alive but its like they aren’t really here. Like they are already dead. Let me clarify, I don’t feel that way, but Doctors treat me that way. Not my EP of course because he is my friend and confidante in the world of Brugada. Also my primary Doctor is the absolute best you can find. She’s not afraid of me and listens to me. Pretty much, whoever was my Doctor before diagnosis stuck with me. But to the rest of the medical field, I am a liability. I have noticed, since diagnosis, Doctors are very hesitant to treat me for fear of causing cardiac arrest. When they see me for the first time, and I go over my diagnosis, they look at me like they saw the devil. Like Im some demon that came to steal their medical license or smack malpractice on them. Ive seen the nervousness, the annoyance, the fear. Do you all know what Im talking about? Something as simple as a headache, or a common cold, or some smaller ailment, is like a curse because most Doctors prefer a “hands off” approach with Brugada patients. Look, I understand…a little. A Doctor doesnt want to mess up and cause death. We are already one breath away from it so who the hell volunteers to take us on as patients? But you know what? We are still alive. We will get sick and have stomach aches, headaches, tooth aches. We will still need care for these non cardiac related issues. Stop treating us like dead men walking. “Hey your ready to drop dead any second anyway! The sniffles is the least of your concern!” Im sick of this attitude. If your afraid, then how about informing yourself a little bit? How about becoming familiar with what aggravates Brugada? What meds are forbidden? Knowledge is power…I always say that. Even for Doctors.Everyone needs more wisdom. No one is exempt. Im getting very frustrated as you can tell. I have a lot of little medical conditions. Either they don’t listen to me because heaven forbid I know more about Brugada then they do. Or they treat me like Ive come for their blood by selfishly coming to see them for help? ” How dare you walk into my office with a difficult case!” Im not dead yet. We aren’t dead yet. We still need care for multiple things through the course of our potentially long lives. Stop being afraid or even worse, being down right annoyed that I have the gall to be your patient. Im not a leper who should be cast off to some remote place in the world. I guess we are dead men walking.But none the less we aren’t all heart, we have other needs and problems that we turn to you for care. Man up! Try living with this shit…

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