"I pictured this a lot different. I guess that’s how life is."
Austin Carlile gave a speech about his experiences of Marfan Syndrome at the OHSU Knight Cardiovascular Institute.
He spoke about leaving Of Mice & Men, losing his mother to the genetic condition and his current health struggles, as well as the value of multidisciplinary care teams to treat Marfan Syndrome.
"About eight months ago, I had to quit playing rock music because of Marfan Syndrome," he said.
"I got home from a tour one time, I couldn’t perform anymore. I had three dural tears in my spine, and my spinal fluid was leaking. I went to two or three different doctors and was turned away."
"I had a doctor call me a liar. I went to Stanford, twenty minutes later they told me exactly what it was. That came from my team, my co-operative care… a group of people who took a little extra time, a little extra energy and a little extra of their own heart… mine might not be okay, but at least was understanding what was going on."
"I pictured this a lot different. I guess that’s how life is. However you picture it, it’s never going to end up that way. I’ve strived my whole life just to honour [my mom], to do what’s right by her, and what’s right by her and honours her is what you're [medical professionals specialising in Marfan Syndrome] doing today. And I just wanted to thank you."
You can watch Austin speak here:
"Right now I’m dealing with health stuff again," he continued. "I have two cysts, just showed up on my spine. I was in the hospital for the past two weeks, and now I’m here. I’m flying to Stanford tomorrow morning and they’re going to do more tests and I get to go see what’s next."
"The biggest thing I wanted, today… was that, for all of you that work with patients, that work with people daily that you don’t know or you’ve just met, or you may never meet again, that person looks at you and sees you as their entire world. That moment, those answers… even if you don’t have the answers, whatever you bring to them, they’ll hold and keep forever."
He also said that:
"Over the years of [being in OM&M], I faced a lot of different medical walls and obstacles. The biggest one was having a heart surgery. There’s a word… co-operative care. It’s so important… to have a team, to have a group of people who know you, who know your issues, know your scans, who you can talk to, and you can look at, and you can explain your situation, and they don’t look at you like you’re crazy. That’s hard to find in the medical field, and it’s something that a lot of people don’t have access to."
"It can make all the world of difference for someone. For someone like me it has. Especially when it’s a matter of the heart."
"When I found out I had Marfan’s and all these heart issues, I was lost. The only people that I think… that I knew truly understood were those doctors and those nurses, the patients and the people I got to meet. [Over] the past eight years I’ve gotten really involved with [The Marfan Foundation] and raising awareness… being able to be part of a community with a group of people that, their whole goal is to outreach, and to help, and to bring awareness, it means so much to me. It means so much to have that support system."
For more information on Marfan Syndrome, head here.