My Rare Disease Does Not Define Me

Sounds of Science


I'm joined today by singer, songwriter and patient advocate, Gracie van brunt formerly based in Los Angeles. Gracie moved back to the Boston area before the Kovic pandemic. She's the recipient of the two thousand thirteen rare champions of hope patient advocacy. Award. From the nonprofit advocacy group global jeans at age two, she was diagnosed with a rare disease that I'm going to let her pronounce, and even before the pandemic, she was an expert at social distancing. She is here to share her story and her art welcome Gracie Hey. Thank you so much for having me what an amazing introduction. Thank you so much for being here. We're I'm really excited. This is gonNA. Be Fun. Yes, I'm so. Yeah you too. All right. So can you tell me about your disease and how is it pronounced? Yes. So it's called Schwartzman. Diamond. Syndrome. Like a Walkman, but just with an ass and then I'm in just like a like a diamond gem and then syndrome and it is a very rare disease that only affects I think around like five thousand people in the whole world how and I was diagnosed when I was two and now I'm twenty five. So it's a genetic chronic disease that is currently incurable. We are working on a cure for it, which hopefully can be developed soon, it is also life threatening. So the main aspect of the disease is your bone marrow and a lot. Lot of patients with SDS as we like to abbreviate, it have bone marrow issues where their bone marrow fails and We don't have enough blood counts really like we don't have enough platelets, not enough white cells and not enough red cells, which basically makes up your immune system So we get sick a lot quicker than a normal person would and we also a lot more prone to getting leukemia, which is a blood related cancer, and so the point of getting a bone marrow transplant would be to eliminate that risk. Let's start to talk about this and dig in Can you tell me about your song run ron run because I'm kind of obsessed. It's pretty great. Thank you. Run run run is a song that I wrote about my disease and having to live with it and confronted every day and The first line is my disease does not define me, but recently it's all I. can see and that is because three years ago in twenty seventeen, I got like a huge Epstein Barr virus. I just got really sick from having the Epstein Barr virus, which kind of like was the catalyst to me getting my heart transplant to use later, and so it's kind of just about having to actually confront my disease head on. which is something I haven't had to do for a long time because you know growing up after all of my hospital stints. I got gradually better and I was able to kind of dislike, put my disease into a little box and leave it there and On. A kind of live my life as a normal person. A. and. So when I got this Epstein, Barr in two, thousand, seventeen, it was a huge huge hit to my system. I was extremely sick for a few months and that ultimately led to me having to get a transplant but. Up, until then, I. You know I could be a normal teenager like do normal activities and. not really have to put a lot of emphasis on my body or my health. But because of this catalyst I'll say Really really. Forced me to take my disease out of that little box. I had it in and really really face it. So the chorus goes. To run run run just like I've always done and I leave it alone. But I, have nowhere else to go which is me really just like having to confront the fact that you know I'm still sick I will never be a normal bio typical person and I have to do this transplant for like to better my own quality of life and Just. Focus on. My health more than anything. So that's pretty much what it's about, and then like a little fun fact is. I had already written it before I got the news about my bone marrow transplant. So I had my doctor's appointment on December twenty, fourth two, thousand eighteen, which is like Yay, Christmas, time such great news. But so I had my doctor's appointment, and I already had like a little demo of this song done because Louis is my boyfriend and he's a wonderful producer and we had already been working on Um songs for my upcoming EP and then we'd already done this one. So the first thing I did when I came home was I actually just listened to this song to make me feel better. Because, it's just like it was just the best remedy for me because it is exactly how I felt in this. Little compact. Song.

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