Of Mice & Men singer Austin Carlile is in so much pain that the band recently had to cut short their European tour so that he could fly home for treatment for the rare fibrostic connective tissue disorder Marfan Syndrome, which causes his body to uncontrollably seize up and causes weakness in his heart, muscles and joints. He’s taken time over the past few days to explain to fans how the disease affects him and answer some of their questions about the disease, which took the life of his mother.
On Monday (Nov. 28) the 28-year-old singer offered a sobering assessment of his prognosis.
all of you saying I should hurry up & get better what’s taking so long. I’ll never be better. you happy? I live EACH DAY as it comes. each
— Austin Carlile (@austincarlile) November 29, 2016
day is a battle. Marfan Syndrome is a fibrostic connective tissue disorder, that means it affects your ENTIRE BODY, and IT. IS. PAINFUL.
— Austin Carlile (@austincarlile) November 29, 2016
I don’t cry on Twitter on all the bad days. I suck it up & keep pushing on. The rare good days?!… I CHERISH those more than you could ever
— Austin Carlile (@austincarlile) November 29, 2016
understand. & I wouldn’t wish it upon anyone. This is why I have such a heart for those hurting, mentally OR physically, because I. AM. TOO.
— Austin Carlile (@austincarlile) November 29, 2016
Carlile was diagnosed with Marfans at age 17 and has received a series of surgeries on his head, feet, hips and ears, suffering a collapsed lung during a show in Denver this summer and canceling shows in 2015 when he was hospitalized after a major heart surgery. On Wednesday night (Nov. 30) he did a Q&A with fans about his condition.
Doing a Q&A this evening as well, answering all your questions about OUR battle/Marfans. Please use #MarfanAwareness & mention @MarfanFdn ? pic.twitter.com/FAZvBAj67p
— Austin Carlile (@austincarlile) November 30, 2016
Profile of courage & strength. ——– https://t.co/XiUja4p7mv
— Chaka Khan (@ChakaKhan) November 30, 2016
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 have you had Marfans?” This explains my actual MUTANT gene 🙂 @TwentyOneKitkat @MarfanFdn #MarfanAwareness pic.twitter.com/dTgfFBXr5D
— Austin Carlile (@austincarlile) December 1, 2016
“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
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
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
For more of his Q&A answers, visit Austin’s Twitter feed.