Brugada Girl ™

I found out yesterday my 7 month old sons genetic test is positive. Im devastated beyond words. That means 3 of my 6 kids have the gene and potential to develop symptoms. Exactly half! Exactly 50%. I don’t have much to write because Im very upset but I know all my readers have been waiting to see. I am especially scared right now in virtue of him being a male because it is much more fatal in men. After all, my father isn’t here, is he?…

I have to say hands down , when people contact me about BrS, it almost never has to do with the physical aspects of this syndrome. Id say 7-8 times out of 10, its about coping, anxiety, depression, etc. Does the medical field realize this? Or care?

Its just something I want to bring up quickly. There isn’t much to do about BrS. There are a couple of rules to follow and maybe we have ICDs but for the most part, its a “sit and wait” type of life. Wait for a shock, wait for an arrhythmia or worse. There isn’t a ton of doctors appointments. There isn’t a bunch of tests to run or prescriptions to write out. Its, in all essence, a rather simple syndrome, as long as you don’t die. Save a life and thats about it.

So what makes it so devastating? Besides the fact that your heart is a time bomb with an undetermined timer and countdown on it. Its not physical, its MENTAL. This is something people have to grasp. And most importantly DOCTORS have to grasp. Don’t just throw this diagnosis peoples way and then yawn and walk out. Take a minute to realize what you just told them…”I know you are completely healthy with a normal life, but sorry to say you will drop like a fly at any moment. But hey! It may happen in your sleep and you won’t even know about it so don’t fret!” That deserves a nice punch in the face if you ask me! We have to bear that burden, carry that cross and even worse tell our family members. Talk about walking on eggshells. I walk on them and my family walks on them even more so. Yeah, yeah, I get it…we all have to die someday. I just want to smack people when I hear that. I really do. I know, we are mortal. Thanks bud for that gentle reminder. But for the most part, many people will grow old. Something we might not get the opportunity to do. Most people will have a disease that winds down and slowly and surely takes your life away. You as the patient will get to grasp and cope with it day by day knowing slowly your time will come. Not with Brugada. That is why its so scary. There is no winding down. There is no warning. Picture walking through life with someone having a gun to your head. When will he pull the trigger? Will he ever pull the trigger? Or maybe he will just knock you out with it but you won’t die and will recover. Thats Brugada…walk through life holding your breath and blue in the face.

Now please tell me, enlighten me, how that is easy. How do you NOT have anxiety or mental wear living like that? Anyone that tells you they don’t live in fear is a liar. Ok, maybe some cope better and stopped worrying but rest assured at some point in their diagnosis they were scared to death. Don’t deny it. Brugada can cause arrest of the brain….Life stops, care free living stops, looking forward to the future stops, its like on certain days you are brain dead. Dead with fear. But its not always like that. I can go days or weeks without thinking about it. But I can have periods that it pulls me to the bottom of the sea like an anchor. My point is, please be aware of the mental aspect. Please be aware of the mental strain on your loved ones. And if any Doctors should ever read my blog, PLEASE be aware of this when you nonchalantly tell your patient they have this…

If you would like more insight into the emotional toil please read my other post https://brugadagirl.com/2015/02/15/brutally-honest/