Of Mice & Men’s vocalist Austin Carlile recently shared a disheartening message about his ongoing struggle with Marfan Syndrome, explaining what he goes through on a daily basis. He endured a four week hospital stay undergoing multiple surgeries to repair tears in his spinal cord, called Dural Ectasia, which is common in Marfan Syndrome. Carlile also underwent a spinal drain placement to contain the leakage. He was eventually released from the hospital, and just when things were finally looking up, he was readmitted for a venomous spider bite. The poor guy just cant catch a break.
The barrage of health issues prompted him to tweet that he has “nothing left to lose”. The singer took to twitter to share the message: “Nothing left to lose. Life has taken it all. All I’ve ever loved. An encompassing emotion, invincibility. Check mate. You still haven’t won. There is literally no more breaking I can do.”
Several weeks ago, Carlile also shared his frustration with fans who constantly tell him to “hurry up and get better” and gave them a swift dose of reality.
“FYI you don’t “get better” w/ Marfans. You GET BY. I’ve had foot, ear, rib, head, hip, back, & heart surgeries just so I can function/live. 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 day is a battle. Marfan Syndrome is a fibrostic connective tissue disorder, that means it affects your ENTIRE BODY, and IT. IS. PAINFUL. 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 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. ”
Named after Antoine Marfan, the French physician who discovered it in 1896, Marfan Syndrome is a genetic disease that primarily wreaks havoc on connective tissue, which is found everywhere in the body. Think of connective tissue as the “glue” that supports your organs, blood vessels, bones, joints, nervous system and muscles, holding it all in place. In people with Marfan Syndrome, their connective tissue is weaker than normal. This affects many areas of the body, but does the most damage to the heart, eyes, bones, and in Carlile’s most recent flare up, his spinal cord.
While people diagnosed with Marfan Syndrome often share similar traits, each person is affected differently. They tend to be tall and slender with very long arms, legs, fingers, and toes. They often develop joint problems, scoliosis or abnormal curvatures of their rib cages. They also may develop severe nearsightedness or other eye problems including dislocated lenses, detached retinas, and early onset glaucoma or cataracts.
“I had major hip surgery up at Stanford University,” says Carlile. “They had to shave down my actual hip socket (due to its massive over growth), remove my femur, remove three cysts from femur, shave & RE-SHAPE femur, and THEN sew me back up. I’ve been on total bed rest ever since and will be for another week or so. After that, comes 2 months of physical therapy to get my strength & mobility back. Because of Marfan syndrome, my legs and hips are a constant issue for me (left foot/hip was repaired when I was young, now the right!) The surgery was one of the most painful I’ve had to date, but I’m so excited to recover and finally see some relief!! Living with Marfans is a constant war for me and my body, but we chalk this one up as a battle won, and on to the next!”
Carlile performing with a leg brace following surgery:
Marfans sufferers can also have sudden collapse of the lungs, which makes performing live as a vocalist extremely risky for Austin. The lungs are supported by connective tissue, and since that tissue is weakened in Marfans, extreme exertion can lead to a spontaneous collapse. Back in August, he experienced just that. “I couldn’t breathe right and I was gasping,” he told Rolling Stone. “I managed to do the rest of the show. Then the medics came and gave me oxygen and the lung somehow kind of naturally re-inflated.” Collapsed lungs can cause a sensation of drowning. It can also lead to sharp chest pain or even heart attack depending on the severity of the collapse, because the heart’s oxygen supply has been cut off.
Aside from lung issues, the most serious thing about Marfan Syndrome is how it can affect the heart. Over time, weakened connective tissue can cause the aorta (a large artery that carries blood to the rest of the body) to stretch, akin to over inflating a balloon. The aorta is wider than a garden hose, and if this ballooning is not treated right away, it can suddenly tear and rupture, causing blood to leak out rapidly. This condition, called an Aortic Dissection, is very serious and more often than not can lead to death. Similarly, this ballooning and tearing can also happen to the spinal cord fluid casing, occurring in almost 75% of Marfan cases, which is what Carlile was most recently hospitalized for.
Carlile has had several heart surgeries, and made a statement on his most recent one: “It was one of the hardest things I’ve ever gone through. It’s hard to go through something like that that’s dangerous in general, and just to not know if you’re gonna be there, four, five or six hours later. When I had my heart surgery, my heart was stopped. They put my head in a whole thing of ice, to stop your brain activity, you’re dead. I was clinically dead for three hours while they did the procedure.”
Now technically, Carlile’s explaination is a slight misunderstanding, but it’s a scary procedure never the less. Hypothermia has long been used in open heart surgeries to lower the brain’s metabolic rate, therefore lowering oxygen requirements. This is a preventative measure, giving the brain an added layer of protection during the surgery, so brain cells don’t die from oxygen deprivation. Surgeons only lower the temperature by a few degrees, so there is most definitely brain activity, it’s just slower. They then put Carlile on a bypass machine, that continued circulate his blood while they fixed his heart. While there is a lot of conflicting information out there, clinical death is brain cell death, which was not the case here.
Even though Marfan Syndrome has no cure, the good news is that doctors can treat or repair many of its symptoms. Thanks to new research and treatments, people with Marfan Syndrome, who get diagnosed early like Austin did, can receive good medical treatment and live long, happy lives.