But it’s so rare….

This is a vent. I read something this morning that just pissed me off so bad I need to rant about it. On a popular heart awareness site there was an article written about a rare heart disorder. Not Brugada Syndrome, but still rare. I was reading through the comments about the article and I saw a person ask why they were writing an article about something so rare when there are so many people with heart disease. And they went on to say that they should only be writing about heart disease because it was more common. After all, the person commented, only about 1 percent have it…

So you have a website that primarily talks about heart disease and they take a breather and post about a rare heart defect instead and it angers people because its rare? We shouldn’t care or be bothered about rare disease because it doesn’t effect many? We shouldn’t care about a disease or disorder someone else has? Only what we have matters? Well let me tell you lady, rare illness effects those people who DO have the condition!! What selfishness there is in the world today! Everyone is suffering with something but lets make it a popularity contest right? At what point do people start caring about other people? Whether you have something rare or common, its still a disease, a disorder, life changing…oh but no! We cant POSSIBLY talk about the rarity! Lets just sweep our problems under the carpet because not many are effected.We don’t count or matter? I’ve never seen such ignorance. Brugada is rare but that does NOT mean it shouldn’t be discussed, taught, researched, or that it isn’t an issue because less people have it. And I mean ANY rare illness. So angry…

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Love you Daddy! 8 years today

What started my whole journey is the lose of my father at 55 today, May 7th. Most people are curious about that very sad day. This is my post from a few years ago. Also, at the end is a link to donate to SADS in his memory. Remember, when you donate to SADS, even through my fathers memorial, I don’t get a cent of it. It all goes to research to Sudden Arrhythmia Death Syndromes (SADS) http://wp.me/P3jgWx-1o

4 Part Series-My Diary

The meat of my blog, which I consider more like a diary, was initially written in 4 parts. But through the years, the posts got lost within all the other posts. People come here to read about my personal experience and have trouble finding it. I’ve listed these essentials in the tab at the top of the blog, ‘Newly Diagnosed.’ Also, here is the link for them http://wp.me/P3jgWx-p8 These posts are a true account of my diagnosis, surgery and recovery and are essential to read to understand me and my memoir. They are raw, intense, sad. Remember…it is MY personal experience. It may not be yours…

4 years since diagnosis

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 🙂

My interview for another article for PBS Nova Next

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/

I’ve been invited!

I’m sure you have all heard about the World Summit for Brugada Syndrome in Milan, Italy happening in February 2017? I hope you have! It’s in regards to an ablation that can reverse ventricular fibrillation in Brugada Syndrome! The pioneer doctor of this procedure is Dr. Carlo Pappone. His secretary reached out to me and said he has invited me as a guest to fly, stay and be a part of the World Summit! Can you imagine!!? I am so honored! Shocked really, that Dr. Pappone would personally invite me to see what this miracle is all about! I haven’t been asked to go as a patient as I haven’t (luckily) experienced V Fib yet. I’ve been invited because I try to be a very visible aspect of the online Brugada Syndrome community and despite me trying to stay mostly anonymous, they have noticed me. I guess I’m more ‘visible’ than I thought haha!  But…don’t hate me…I had to say no. With such a large family, I wouldn’t want to go without all my children and my husband along for such a historic event. It would just be too difficult to travel either alone or with my family so sadly I had to say ‘next time.’ Anyhow, I just wanted to share the news! Feel free to read up about the World Summit on their website http://brugadasyndromeablation.org

A Bit of Info on the World Summit for Brugada Syndrome

I’ve mentioned the World Summit on Facebook and Twitter and there seems to be some questions. I to have a ton of questions. Being I am only a layman, with no medical expertise whatsoever, I decided over the last few months to do my own research on right ventricular ablation to help reverse BrS. I didn’t get too far, as I am only a patient. But I have a rough idea of what is going on. I’ll share with you what I gathered, but bear in mind, you should do your own research. I’m in no position to speak as an expert on the WS or ablation or anything. I speak as a patient who has hope in her heart (literally) and I want to share it with my readers. What I’ve gathered is this:

–Only certain patients are eligible for the ablation. You have to have repeated ventricular fibrillation to be a candidate.

–There is still much research to be done to perfect it and assure it is safe. From what I have read there are definite dangers to an ablation.

–It seems most the research is done in Europe, specifically in Italy.

–It is not being spoken of as a cure but rather a way to stop ventricular fibrillation. This confuses me because stopping VF, in turn stops cardiac arrest, right? So wouldn’t that be considered a cure? I’m sure I am wrong…

–When patients with a classic Brugada pattern on their EKG had the ablation done, the EKG reverted back to normal! I have an abnormal EKG 24/7 and have for 15 years. The thought that it can be totally reversed, which may decrease my risk, is HOPEFUL!! But I haven’t had VF so I wouldn’t be a candidate anyhow, I guess. And it seems it reversed the likelihood of VFib or perhaps stopped it all together ?

–Do the patients still have bouts of VF after the ablation? Do they need an ICD still? I don’t know. Being a patient is frustrating because we aren’t entitled to knowing all this info.

Thats about it! It’s not much info but I know enough to have hope for the future and for my kids and for all of us. I just wanted to share 🙂

You can stay informed by visiting http://brugadasyndromeablation.org

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