Brugada Girl ™

Today is the 4 year anniversary of when I was officially diagnosed. It wasn’t too long after that day that I started this blog. Although I have to say, I never treated it like a blog. I barely write on here. I don’t have photos and links and all that stuff. For me it is a memoir and a diary. I wrote because I felt it was therapeutic. I then decided to share it with hopes that other patients can relate or it would help them through diagnosis, the testing phase, surgery and recovery. And at times, I wish I didn’t have this blog anymore. I start to feel conscious about having my deepest thoughts out here for the world to see. But then I have people contact me and read and say I help them through it all and decide to keep it. I’ve looked over my entries from the last 4 years, and it isn’t many. It’s actual pretty amazing that a blog with only about 50 posts has been viewed the world over with tens of thousands of viewers. They say you can only make it as a blogger if you post often and professionally. But Im not trying to ‘make it’. I stay anonymous. I don’t want fame. I prefer not to be in the lime light. But instead of writing in a hand written diary, I type it up here and publish it. It’s weird, I know. Wanting privacy then publishing! Anyhow, as I look back at my original posts, they are very dark. They are depressing, dramatic and probably unsettling for some readers. I don’t feel now, like I did then. And there is a part of me that says I shouldn’t have those posts up in case it scares the hell out of some people. Sometimes I want to delete them. But then my husband tells me, it’s a journey and it’s important for people to see me change and grow and steady myself through the years. Yes, the beginning posts are sad. They level off and seem ok and go back to an abyss.Back and forth, good days and bad. But I try not to do that as much because I want people to have a normal life and hope. My thoughts for this anniversary, is that I do want people to see how I felt in the beginning but also how I started to accept my diagnosis and kept living and made a little peace with it. I hope whoever reads this understands that this is my diary, my thoughts, my feelings and by no means how everyone will feel. But also, see that with time, the weight of the diagnosis lightens a bit and you CAN move forward. Have I moved completely forward? Not at all. I’ve taken steps forward but I’ll never run, by no means. But you can have some hope and peace, even with Brugada Syndrome, and my online diary/ blog shows it 🙂

I had an interview with a journalist for PBS Nova Next in regards to genetics and Brugada Syndrome. Possibly in the future, genetic defects can be fixed? Read here: http://www.pbs.org/wgbh/nova/next/body/crispr-and-stem-cells-could-speed-studies-of-rare-diseases/