Donate to SADS

 

Please donate money to SADS (Sudden Arrhythmia Death Syndromes) for research and support, through my father’s Memoriam Fund on their website. All money goes to SADS, nothing to me. Help me keep his memory alive and help each other with money well spent. You can also donate through his link if you go to their website at sads.org, go to Online Community then In Memoriam. His fund is on page 5, Robert De Filippis

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8 Comments (+add yours?)

  1. Trudy Vaughn
    Jul 23, 2015 @ 22:55:59

    Our family’s story with Brugada started with our 10 year old son. I knew he had 1 st degree heart block and a murmur, so we were under a cardiologist care since kindergarten. I also have a daughter 16 and both are heavy into roller hockey. My son started c/ o fuzziness in his chest and I noticed him really slowing down lagging behind when he had always been a aggressive skater so I took him in for a Dr’s visit , thank God Dr Kwajhi noticed suttle changes in his EKG, sent us to a rythym specialist and thru genetic test it was confirmed. I was dX and so was my daughter . I am a nurse but I struggling to rake my brain around how we been tested positive for Brugada. I feel I need to keep search and learning for my kids any info is important , we all see cardiologist at UC Davis have a great team of support.

    Reply

  2. Steve "Goose" Randall
    Jun 16, 2015 @ 03:28:50

    Hello, Goose here… I haven’t looked thru everything on your site yet because I am new to the Brugada Syndrome. I am 51, and was just diagnosed in March. I did the EP study and they said I was a type 1, but my test was just under the threshold level. My heart also skips beat very often which I can actually feel. They ended up putting a loop recorder in my chest for now. I probably don’t get the best Drs. because I go thru a VA Hospital, because I’m a Veteran. They are already at the point of re-thinking the defibrillator implant 2 months later because of so much activity a month. I haven’t had any fainting spells as of yet. I do get alot of activity after eating meals, which seems weird, and also when my core temp rises.. (I’m a self employed contractor and work on roofs, decks, etc.) Just trying to figure this out since I’m so new to it, I just got the loop recorder in April. I was actually missed diagnosed with A-Phib according to them back in 2009. So excuse my lack of knowledge on this, I am still a newbi to all of this.. Is it normal to feel like “Is this going to be it?” every time I get skipped beat incidences, and my heart rate jumps from 60 bpm’s to 170 bpm in a split second, while I’m doing something like just sitting on a couch? Thank you for your time, and I hope to read everything on your site soon..

    Goose

    Reply

    • AliciaB
      Jun 16, 2015 @ 09:03:53

      Hey Goose! Let me say right away thank you for your service. I always hold the military near and dear to my heart. My husband was in the Marines, my son in law is a Marine and I had several Uncles in the Army! Let me add, I am no doctor or even in the medical field so my opinions are just my own. The skipped beats you have, I have as well. But what scares me about yours is the fact they soar to 170. That has never happened to me. Its more like just a hard beat or fluttery beat. Anytime I went as high as 170 it was an arrhythmia. Im not saying yours is an arrhythmia but I would definitely mention it to your doctor! Thats a high heart rate when your just sitting down! Brugada Syndrome is made worse with heat and big meals.Thats a fact.The heat, whether from being outside and getting over heated or from a fever, can give an arrhythmia.So can a big meal. Im not sure the exact mechanism but from what Ive heard and read, a big meal,changes the vagus nerve, which changes the way the heart beats. Its best to stay cool and hydrated. Always have lots of water and take rests when your hot. Take meds to bring down a fever. As far as eating, try to eat small meals and see if that helps. Don’t over stuff with too much food. Is it normal to sit and think “Is this going to be it?” ABSOLUTELY! I don’t think Ive talked to a single person yet in 2 years who doesn’t obsess about dying or being shocked. Brugada has many mental aspects which I wrote articles about here on this blog. It messes with your body and your mind. Im here for you…

      Reply

  3. Brugada Friend
    Apr 24, 2013 @ 18:16:27

    Dear Alicia – Really wonderful of you to share your story in detail and by doing so, helping so many others who are impacted by brugada as well! How can one get in touch with you directly? I have a dear friend who was recently diagnosed and would love to connect you two if possible. Best, Brugada Friend

    Reply

    • aliciatburns
      Apr 25, 2013 @ 09:20:42

      He can contact me here by writing comments or ‘friend me’ on facebook and send me messages if he prefers to talk privately.Im also on Twitter @ brugadagirl
      🙂

      Reply

  4. Erica Haak
    Mar 30, 2013 @ 17:14:47

    Thank you for sharing that story. You will no doubt help many, many people because of your openness and willingness to share it.

    Our story is very different to yours, but the one thing that is exactly the same is that, with my son, it was a very young doctor who recognized the abnormal ECG. Maybe these older doctors need a refresher course – they should probably keep up with new findings and modern medicine!!!!

    Reply

    • aliciatburns
      Mar 30, 2013 @ 17:27:35

      Well in all fairness to these docs Im insulting I believe I was told they were looking at a right bundle branch block. Its very, very common. You are born with it and its benign. It doesnt seem to cause any problems. The left branch block is worse but less common. Anyhow, sometimes a RBBB can be present with heart disease. Thats why they kept doing exercise stress tests, nuclear stress tests and echocardiograms which is a heart ultrasound. Everything was fine. So I guess they figured ” shes got a benign RBBB with all tests normal and a healthy heart” Again, Im just guessing. Im rather annoyed that no one picked up the diagnosis because it could have killed me in the mean time. The doctor who finally said “please see an electrophysiologist” was a young doctor as well. So I give her a ton of credit for sending me to the EP. An EP is supposed to oversee Brugada, not a cardiologist. That is recommended by Dr Brugada himself

      Reply

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