About Me

Im a happily married housewife and mother of 6 from New Jersey.I was diagnosed with spontaneous Type 1 Brugada and had an ICD implanted at 34 in 3/2013.I lost my father suddenly to Brugada when he was healthy as can be at 55.My grandmother was a “fainter” with undefined cardiac issues as well. I have found out 3 of my 6 children also have the same gene mutation as me (SCN5A) but they still have normal EKGs so require life long monitoring.Im not a doctor, scientist or someone from the medical field. I cant answer technical questions or describe it like Im a cardiologist or electrophysiologist.I type like I talk. Im not going to have perfect grammar or punctuation. Im sarcastic, humorous and tend to curse lol. I hope this blog/memoir gets across the negative and positives of this rare heart defect and how to live and cope with life and a diagnosis. Remember, this is MY account of Brugada Syndrome,and every person may have different feelings and thoughts about it. Its an individual journey.You may feel differently than me and that is fine. To each his own. Everyone loves to email me to talk and get some info and support. Feel free….BrugadaGirl@yahoo.com.   

Don’t have time to read a whole blog but want a glimpse into my diary? See my very first post here http://wp.me/p3jgWx-8

See my featured interview in the magazine EP Lab Digest:

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

See my interview for PBS Nova Next here:

http://www.pbs.org/wgbh/nova/next/body/crispr-and-stem-cells-could-speed-studies-of-rare-diseases/

My interview right after diagnosis with Carolyn Thomas of Heart Sisters:

https://www.google.com/amp/s/myheartsisters.org/2013/08/11/brugada/amp/


Brugada Girle

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See my intro on you tube here: https://www.youtube.com/watch?v=iBXTS11IfKA

View Alicia Burns's profile on LinkedIn

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18 Comments (+add yours?)

  1. Paola Zoccolino
    Sep 26, 2016 @ 08:38:02

    Dear Alicia, my name is Paola and I am working on the First Summit on Brugada Syndrome Ablation that will be held in Milan coming February.

    First of all, on behalf of the Scientific Directors, we would like to thank you for your interest on the Workshop.

    As Prof Carlo Pappone would like to personally invite you in Milan to see with your eyes what’s going on, I am kindly asking you to provide me with your contact details sothat we can get in touch better.

    Thank you and warm regards
    Paola

    Reply

  2. Daniel
    May 12, 2016 @ 11:12:39

    Basically I’ve been experiencing the frustration of ongoing diognosis…

    My symptoms began July 2015; I’m 22 and otherwise a healthy individual. My symptoms include SOB, ectopic heartbeats, fleeting pains in the left side of my chest and the occasional, but transient, experience of light headiness. I ocassionaly notice an irregular pulse also.

    The event that instigated my first visit to A n E occurred last July: my heart raced, I felt light headiness and experienced a vague aching in my left arm. Upon my visit they found a pattern suggestive of Brugada Syndrome. I can only assume it was type 2 or 3.

    They kept me overnight and eventually decided, I belive in consequence of there being no family history of sudden death, to make me an outpatient. When I eventually underwent a ajamaline provocation test, it came back negative and I was reassured that I don’t in fact have Brugada.

    However, in consequence of these ongoing, and quite acute symptoms, I have visited A n E a further 8 times regarding these issues. Sometimes my ECG comes back normal and a few times it elicits an incomplete RBBB, which I’ve been informed is nothing to be concerned with.

    I am trying to get one with my life but I’m finding this ongoing issue is completely arresting my whole existence. Doctors seem to be consistently uninformed, no uniformity from one doctor to the next and there seems to be no urgency whats so ever when the associated arrhythmias can cause sudden death at any time.

    I’m just frightened they’ve missed it and that I still might have Brugada: ajamaline tests are not full proof and I it just seems too much of a coincidence that I intermittently exhibit a IRBBB and experience these symptoms daily.

    Should I be reassured and carry on trying to shove it to the back of my mind or are doctors neglecting explicit signs? I need some answers, I’m truly in perpetual fear of sudden death.

    I should add that although doctors keep mentioning anxiety, I AM NOT an anxious person. The only anxiety I really experience is in consequence of these symptoms and the associated risk.

    Reply

  3. Carmen
    Mar 02, 2016 @ 18:49:54

    Hi, just found your blog. My name is Carmen and wanted to share just a small part of my story as a Brugada patient. I was diagnosed with Brugada at age of 56. Used an external defibrillator for 2 months when had the implant. A week later the leads from the defibrillator dislodged and was hit more than 35 times. Almost kill me. Leads replaced next day. about three months later, leads dislodged again and were allocated this time in my diaphragm, before replacing the lead again my husband recommended the study to find out what was really happening and if I really was a Brugada patient. Guess what, not needed and defibrillator was removed. No one in my family had heart problems or related issues.

    Reply

    • AliciaB
      Mar 02, 2016 @ 19:25:35

      Just to be safe you should probably get another Doctors opinion just to confirm that you don’t have it.

      Reply

    • Freddy
      Apr 11, 2016 @ 00:42:37

      Hello Carmen! would you mind sharing a bit more about your first Brugada Diagnosis? Did you have any symptoms? What made you go to the Doctor to find out about Brugada?

      Reply

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    • AliciaB
      Feb 04, 2016 @ 17:11:23

      There is a bit of a typo here. I didn’t watch my father suffer with it. He died without warning from it and was diagnosed after the fact. I don’t have 1 child with it, I have 3 with it

      Reply

  5. Anonymous
    Jul 03, 2015 @ 12:03:47

    Hello, I stumbled across this while doing some research for myself. I have not been dx with any heart condition at this time. However have sx that bug me on a regular basis. I have had several ekgs which the results come back that I have a rapid heart rate with early beat. My sx are I can feel my HR racing through out my body. most of the time I can see it move my shirt.i feel my heart skip a beat off an don I have off and on pains that are on my left side of my chest and in the center on my shoulder blades. I get SOB doing simple things when this happens. I can not sleep at night because my heart beats so hard it wakes me up( which sounds odd) a retired cardiologist seen a copy of one of my EKGs and that is where I herd the word Brugada from. what genetic testing was done to help you with your dx. On my fathers side there is a strong hx of cardiac arrest which killed my grandfather and great. Also two of my uncles both in their early 40’s have had cardiac troubles. Should I leave it at I just have fast hr with a early beat. All my labs so far are normal and I asked for a ECHO but was told it wasn’t needed or should I go for other opinions? I have seen my family doc and been to the ER and have had a holter monitor for 24 hrs. I am at a loss as to what to do. im told there is nothing to worry about ,however don’t feel right.

    Reply

    • AliciaB
      Jul 04, 2015 @ 10:17:59

      If a Doctor mentioned Brugada to you I would absolutely get another opinion and keep researching. There is a distinct pattern on an EKG with Brugada. As far as I heard, nothing else would show that pattern. So if its there, it definitely needs to be addressed. I have all normal tests as well except an abnormal EKG and genetic test. Never stop listening to your inner voice. If something doesnt feel right it probably isn’t right. Keep in mind Brugada doesnt have any structural problems. Therefore all tests generally seem normal. Its a defective gene in the sodium channel that is only revealed through EKG, a drug challenge or seeing if you have the gene through genetic testing

      Reply

  6. Marie
    Oct 03, 2014 @ 14:52:07

    Hi, after a bit if searching I stumbled across your site and thought I’d drop u a line for some advice! I was diagnosed with BrS almost 3 years ago. I live in the uk and after a couple if collapsed and further investigations a ajmaline chaklenge made the diagnosis! I have otherwise been symptom free in this time! I have not got an icd fitted as my cardiologist wanted to monitor my condition before making the decision to fit one. I have a reveal loop recorder fitted and am under the pacemaker team at my local hospital fir regular review. Anyhow I am now 28 weeks pregnant with second baby – my first was a natural delivery with no intervention but this was before I was diagnosed. This time is a whole different ball game. I was hoping for a home birth (ha ha fat chance) so accepting that I’ll now be in hospital am a little worried about what’s in store! Your story about the epidural scared me to death, pardon the pun, and I will definitely take that info to my antenatal cardiologist! But do you know if anyone who had BrS and has had a intervention free labour! I really want to do it naturally again and don’t want this diagnosis to mean I have a labour all plugged in to machines etc… Any experiences or info would be gratefully received! I get the impression in the uk women of my age with this condition are a rarity and I’m struggling to find any information.

    Reply

    • aliciatburns
      Oct 03, 2014 @ 19:33:57

      Hi Marie! Thanks for reading my blog and congratulations on the baby 🙂 I don’t have much experience with talking to women about their deliveries.Brugada is rare and pregnant women with Brugada is even more rare lol. Everything I write about is my personal experience or opinion, not law. I can say I am glad you won’t be doing a home delivery. It too risky. The heart does funny things and reacts funny when a person is in pain. And its not just you,you have to worry about but the baby as well. There are 2 lives at stake here. If you went into cardiac arrest it would affect you and the baby.My opinion is being in a hospital is the safest place for you and your child. Heaven forbid there is an emergency with you or the baby (who can inherit Brugada) you would be in a hospital. As far as a hospital delivery, you can opt to go natural and to not have an epidural.Although my doctors felt pain would be too much for my heart. Its up too your cardiologist to decide if the labor pains will be to much for your heart.Just be sure you have the list of meds you cant take if you do get an epidural.In my personal case, I didn’t really have a say. My doctors dictated to me what best for my heart and the well being of the baby. Do whatever they feel is safest for you both

      Reply

  7. Anonymous
    Jul 19, 2013 @ 11:39:24

    Erica, do you experience any bradycardia with your brugada syndrome? I know sometimes they are linked and wanted to see you were paced at all with your icd. Also, I am a new icd receipient- still trying to figure out the genetics of it- but I find myself scared to drive even though I am now allowed….do you drive?

    Reply

    • aliciatburns
      Jul 19, 2013 @ 20:40:53

      Erica doesn’t have an ICD yet. There are certain laws about driving depending where you live. In the US you cant drive for 6 months if you’ve been shocked or had cardiac arrest

      Reply

  8. Erica Haak
    Mar 28, 2013 @ 08:03:33

    Oh, and when I described you to my husband, he said “are you sure you didn’t write that about yourself?!!”. I am a housewife, am incredibly sarcastic, and joke ALL the time!

    Reply

  9. Erica Haak
    Mar 28, 2013 @ 08:00:47

    Oh my goodness, it is so amazing reading about who you are (probably should have done that before, haha!). You have no idea how parallel our lives have been! Check this out:
    I am 35, newly diagnosed with BrS
    I have 5 children
    I was 29 when my dad passed away (altho not from Brugada)
    I am a devoted Christian
    Haha – amazing!!!

    Can I ask you, are you symptomatic of BrS???

    Reply

    • aliciatburns
      Mar 28, 2013 @ 08:39:29

      We sound like twins! Well in regards to symptoms, for the time being I am considered asymptomatic. But that changes, usually with age, especially in the 30s and 40s. They seem to be the deadliest decades from what I read. I have alot of palpitations, fluttering and pre-ventricular contractions (pvcs) . My father died young of sudden death, so I saw the cardiologist for years about these symptoms. They seem to think they are unrelated but I dont think so.Its at those visits that someone finally picked up on my EKG although I knew it was abnormal for years but many doctors didnt seem to notice. Jerks!! I think we are a part of the learning curve of this because its so new and rare. My EKG is always abnormal and Type 1, the worst kind.Ii had the genetic testing done at a huge cardiac lab here in America and came back positive for a class 1 mutation, also the worst kind. Between my EKG, my father and positive genetic test, they made the diagnosis. But symptoms always arise and sometimes it can be the worst one, which is death, so generally if a doctor feels you fit the criteria its best to get an ICD ” just in case”

      Reply

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