Of Mice & Men's Austin Carlile opens up about Marfan syndrome to create awareness for rare disorder
Of Mice & Men's Austin Carlile battles Marfan syndrome—a rare connective disorder. In a Q&A on his Twitter, the frontman has opened up about that battle like never before, explaining exactly why his band has had to cancel tours, the pain he endures daily and what he has learned. This is all in an effort to create awareness around the rare disorder.
Read it all below, and visit the Marfan Foundation to find out more.
Read more: Of Mice & Men’s Austin Carlile shares honest message on health: “I’ll never be better”
Is there a cure?
one day hopefully! as of now theres NO cure for Marfans, symptoms are treated as they come. injuries, dilated aortic valves, arthritis, etc. https://t.co/gNtmYO7mLY
— Austin Carlile (@austincarlile) December 1, 2016
How long has he had Marfan syndrome?
“How long have you had Marfans?” This explains my actual MUTANT gene 🙂 @TwentyOneKitkat @MarfanFdn #MarfanAwareness pic.twitter.com/dTgfFBXr5D
— Austin Carlile (@austincarlile) December 1, 2016
What has he learned?
“What have you learned from having Marfans?” Could have included much more than these 2 paragraphs x @music4leah @MarfanFdn #MarfanAwareness pic.twitter.com/VEsRu1wiUm
— Austin Carlile (@austincarlile) December 1, 2016
Read more: Of Mice & Men’s Austin Carlile shares update on his health
About the pain he endures daily:
“Is it painful?” – PAIN PAIN PAIN EVERYDAY THAT I AWAKE…. let me explain…. @I_Am_A_Stray @MarfanFdn #MarfanAwareness pic.twitter.com/VtWJ7SiZf3
— Austin Carlile (@austincarlile) December 1, 2016
Carlile explained the meaning behind a track from Of Mice & Men's most recent album, Cold World, called “Pain.” He says:
It’s called “Pain” because that is what it’s about: It talks about my personal journey of the last few years and how I relate that to the current state of the world that we live in now. People face pain every day, whether it be physical, mental, spiritual, emotional, metaphysically, metaphorically—everything. It’s something we wanted to touch on because it’s been such a big part of my life and pain in general has been something I have been living and breathing for the past 12, 15 years. The tour we have coming up with Slipknot and Marilyn Manson gave us an opportunity to get our foot in that door of music that still makes me want to scream my face off. And we have songs [on the new album] that do that. There are also songs that may not have any screaming because there doesn’t need to be. If I’m screaming on the record, it’s because I’m pissed about what I’m screaming about. It’s really important for us to paint that picture for the listener.
Why Of Mice & Men tours have been canceled:
Lots of “what injuries caused the cancelling of recent tours?” I've written about them & most recent here: @MarfanFdn #MarfanAwareness pic.twitter.com/WJxwFtU7tO
— Austin Carlile (@austincarlile) December 1, 2016
Earlier this week, it was announced Of Mice & Men would not be able to go out on their upcoming tour with A Day To Remember due to Carlile's ongoing recovery. This news came after Carlile's month-long hospital stay, which began when the band were forced to cancel a European tour, so the singer could focus on his health.
Read more: Of Mice & Men’s Austin Carlile returns home after nearly month-long hospital stay
Signs of Marfan syndrome:
“What are the signs of Marfans if someone thinks they have it / need checked out?” Good question! @WbLauren @MarfanFdn #MarfanAwareness pic.twitter.com/3kAydxLNIw
— Austin Carlile (@austincarlile) December 1, 2016
Treating symptoms:
Since there is no “getting better” you basically treat each symptom as it comes. Marfans is very preventive though, especially the heart ❤ https://t.co/O8odg5iYIJ
— Austin Carlile (@austincarlile) December 1, 2016
How many procedures has he had?
I have had over 30 major procedures and surgeries since I was born. Was a VERY sick baby as well. https://t.co/d67YI5G7Xb
— Austin Carlile (@austincarlile) December 1, 2016
Why the lack of awareness?
Its MUCH more rare. not even all DOCTORS KNOW what it is. If I go to hospital on road & they've never heard of it, I turn around & walk out. https://t.co/Bm3xK02BWa
— Austin Carlile (@austincarlile) December 1, 2016
Read more: Of Mice & Men’s Austin Carlile has lung collapse mid-set, still finishes show
His inspiration:
“What is the first thing that inspires you to keep going?” This one made me tear up… SO thankful ❤ @vicshxir @MarfanFdn #MarfanAwareness pic.twitter.com/Dbug345gvI
— Austin Carlile (@austincarlile) December 1, 2016
Pain management:
“What do you take for pain management? My doctors don't know for me?” ������ @dizzzy_dreamer @MarfanFdn @StanfordHealth #MarfanAwareness pic.twitter.com/I8fPWGs3lU
— Austin Carlile (@austincarlile) December 1, 2016
How did he know he had it?
We knew it was SOMETHING, but there wasn't enough awareness yet, that's why my mom passed �� & THAT'S why I'M raising #MarfanAwareness now! https://t.co/UvNrFgycwF
— Austin Carlile (@austincarlile) December 1, 2016
How does he help others and give positivity when dealing with so much?
Because helping others & reaching out to them, seeing THEIR happiness, helps ease MY pain. It helps seeing ppl I care for safe & smiling! https://t.co/We0sqFJrNI
— Austin Carlile (@austincarlile) December 1, 2016
Read more: Of Mice & Men’s Austin Carlile was “clinically dead for three hours” during heart surgery
You all are the best! Thank you for helping #MarfanAwareness trend tonight, and I hope my in depth answers can help pertaining to other
— Austin Carlile (@austincarlile) December 1, 2016
questions you may have! Please follow the @MarfanFdn & can't say enough how thankful I am for all of yall's love & support. So much love! ❤��
— Austin Carlile (@austincarlile) December 1, 2016
“TIME WILL HEAL” via – ofmiceitaly ❤ pic.twitter.com/d5Pcu4ccsU
— Austin Carlile (@austincarlile) December 1, 2016
Follow the Marfan Foundation on Twitter here.