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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8 Comments (+add yours?)

  1. James W.
    Aug 21, 2017 @ 02:40:19

    My name is James. (Age 32) I also have found it very difficult to find any information about this rare disease. I was diagnosed with Brugada about a month ago. I was in a bad car accident bc I passed out behind the wheel and hit an oak tree. Good thing is, is that I didn’t die from the impact and got to a hospital fast enough that they were able to see my irregular heart beats. Only in the last year or so, I was passing out about once a week and couldn’t figure out why. Come to find out later, that there are many physicians that also don’t know a lot about Brugada and bc it’s so rare, most don’t think of it as a initial possibility. After i had my ICD implanted, I haven’t had one episode. Anyway my advice to anyone reading is that, if you are having similar episode’s, please try getting in to see a Cardiologist and get their input about the possibility of having Brugada. Again, it might be something your regular doc might overlook. If it isn’t Brugada, it may be a related heart issue. I’d like to thank others for taking the time for their input on the matter. God Bless…

    Reply

    • AliciaB
      Aug 23, 2017 @ 06:28:43

      Hi James. I’m very happy to hear you are safe now with an ICD. And yes, there are plenty of doctors who don’t know what it is. My abnormal EKG was overlooked many times. I say the same, if something doesn’t feel right with your heart, get it checked out, don’t mess around. Better to be safe than sorry.

      Reply

  2. Lavonne
    Jun 28, 2017 @ 10:52:14

    Dear Alicia,
    I just found your story online and I’m in tears right now because I finally feel like I’ve found someone that understands. I’m a thirty-five year old mother of one who’s had heart palpitations and shortness of breath for some years now. I was told I suffered from panic attacks. That is until April of this year when I had severe heart palpitations while driving. I went to the hospital and was told by the ER doctor that I had Brugada. His exact words were… You’re at risk for SADS (sudden adult death syndrome), you’ll need to follow up with a specialist as soon as possible but until then, go home have a glass of red wine and try to relax. I had never heard of Brugada and as soon as I began research I was so frightened and angry. Of course it’s now June and I had my icd put in exactly one month ago. I tried to tell my doctor that I get heart palpitations at night, he says that it’s in my head. That it’s an adjustment to the icd. I’ve been looking online for someone else who has night time symptoms like mine. Yours was the first article that I found that mentioned it. I’ve had this diagnosis for less than three months now. I’m trying to gain as much knowledge as possible. My son has an appointment to see if her as it as well. I’m terrified about that to. Thank you for sharing your story. It’s made me feel a little less alone in this diagnosis this morning.

    Reply

    • AliciaB
      Jun 28, 2017 @ 11:10:25

      Hi Lavonne! You are absolutely NOT alone. Our tale is a common tale…not knowing what it is, feeling like no one understands, feeling like Doctors don’t care or understand. It’s an adjustment, a lifestyle change and very much an ongoing learning process. Be patient with yourself as you digest this all

      Reply

  3. Andy Droz
    Jun 15, 2017 @ 02:33:41

    Dear Alicia
    Do not let yourself go crazy. We live in a time where everyone is looking for himself. The politicians show us: “America first”, for example, in the States. We dont want refugees in Europe. They should look for themselves.
    Of course, the same is true of your own illness. As long as it does not concern me, there are no basic resources for a rare disease. We are not the only ones. There are children with rare diseases. The pharmaceutical industry, however, does not research. You can not make a big profit. Unfortunately this is the reason. They just let these children die … If the private industry does not research, it would really be a matter for the state. Unfortunately, however, the pharmaceutical lobby considers that the money is only spent on profitable studies rather than researching for rare diseases. This is our time. Unfortunately!

    Reply

  4. Carolyn Thomas
    Jun 14, 2017 @ 22:09:07

    EXACTLY! “If you see a health article that doesn’t interest you, DON’T READ IT!” I’m going to go embroider that on a pillow now…
    No wonder you wanted to pounce! I don’t even know her and I feel like pouncing, too! Arrrggggh….
    Now we have to take some nice deep breaths… 😉

    Reply

  5. Carolyn Thomas
    Jun 14, 2017 @ 14:38:16

    Hoooooo boy! That would make me mad, too! That comment was clearly made by a person with what we call “healthy privilege” (somebody so ignorant about other people’s health conditions that they cannot imagine or understand or even try to empathize with those who live with these diagnoses).
    Alicia, I notice the same kind of ignorance on my blog about women’s heart disease. I focus on women’s heart health. I am utterly obsessed with women’s heart health. I write about women’s heart health. There are lots and lots of sites covering men’s heart health (and let’s face it, until recently, we’ve had decades of health literature and research and funding ONLY on men’s heart disease. Even the lab animals used in cardiac research over the past four decades have been male animals, not females!) So it’s fair to say that men’s heart health has been widely covered elsewhere.
    Yet whenever I do write on my Heart Sisters blog about emerging research specifically focused on women’s heart disease, I know that I will inevitably get comments from (male) readers who say: “What about the men!? Why aren’t you talking about MEN!?” I feel like responding, “Honey, it’s ALWAYS about the men!”
    So a “popular heart awareness site” that once in a blue moon covers a rare heart condition is actually helping to educate those out there who might be ignorant of what living with a rare heart disease is like.
    Too bad the truly ignorant feel compelled to demonstrate their ignorance by making public comments! 😦
    Meanwhile, thank you for what you do to raise people’s awareness of Brugada Syndrome!! You are my go-to person now for All Things Brugada!!
    regards,
    C.

    Reply

    • AliciaB
      Jun 14, 2017 @ 14:55:02

      You just keep doing what your doing. There is always going to be someone who feels they are being slighted or the victim. Brugada is more common in men. Actually, 9 times more fatal, so Ive been told.Yet here I am, a woman with Brugada. Ignoring me isn’t going to make me go away! I just feel like, if you see a health article that doesn’t interest you, don’t read it! To take the time to say “hey what about me?” is just infuriating! I wanted to pounce on her!

      Reply

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