Happy Rare Disease Day! 5 Musicians with Odd Ailments
Like all good people, I want to kick cancer in the dick, but I will say one thing for the bastard: When you're as widespread and horrible an attack on the human body as cancer is, you at least leave behind you a network of survivors, support groups, foundations and so on for people to participate in a shared experience. A horrible one, but at least you can find others who will understand totally what you're going through and how they dealt with it.
You can't say the same for someone afflicted with, oh, I don't know, Jumping Frenchmen of Maine Syndrome. There's no lobby in Congress fighting for you, there's not a Friends of Jumping Frenchmen of Maine Syndrome chapter nearby and you are pretty much on your own.
This problem is why the last day of February is observed as Rare Disease Day.
The goal of the National Organization for Rare Disorders is to use the observation to sort of big-tent all the people afflicted with something for which no telethon exists. It started in 2008, on the 25th anniversary of the Orphan Drug Act, which offered tax incentives to pharmaceutical companies for developing and manufacturing medicine to treat diseases that were too rare to be big markets.
And just because you're a famous rock star doesn't mean that some of the oddball ailments won't nest inside you. Today's playlist is dedicated to our favorite musicians who deal or dealt with rare diseases.
Mas Musica! featuring La Gusana Ciega, Porter, Siddhartha
TicketsSun., Oct. 2, 6:00pm
Nothing But Thieves presented by Ones To Watch
TicketsSun., Oct. 2, 7:00pm
Nathaniel Rateliff and the Night Sweats
TicketsMon., Oct. 3, 7:00pm
THALIA - Latina Love Tour
TicketsMon., Oct. 3, 8:00pm
TicketsTue., Oct. 4, 7:00pm
"The Letter That Johnny Walker Read" Asleep at the Wheel pedal steel guitarist Lucky Oceans was in critical condition in 2008 when he was diagnosed with Guillain-Barré Syndrome. The disease has no known cause, and afflicts victims with weakness and paralysis starting at the feet and moving up.
Luckily, Oceans made a full recovery, and posted a story on ABC about his experiences with a helpful guide for others who may think they have GBS.
"Refugees" Nic Potter was the bass player on Van Der Graaf Generator's best album, The Least We Can Do Is Wave to Each Other, as well as contributing to a host of other acts. During the last two years of his life, he was diagnosed with Pick's disease, a neurodegenerative disease that attacks the brain cells, causing loss of speech and dementia.
It is also characterized by behavioral changes like a loss of social conduct, compulsive pacing and overactivity. The condition is fatal, and claimed Potter's life earlier this year.
"Just Like Me" Run-DMC's Darryl McDaniels was dealt a rough hand in the late '90s. He was severely depressed from spending all his time away from his family on tour, he and Rev. Run were growing apart creatively, and Run DMC was itself in decline as a successful hip-hop act.
To top it all off, McDaniels contracted spasmodic dysphonia, which causes involuntary spasms of the larynx muscles and threatened to derail his career completely. He was seriously contemplating suicide until he heard Sarah McLachlan's "Angel," a song that inspired him to turn his life around.
"Missing" Everything But The Girl's Ben Watt was in serious danger in the 1990s when it was discovered he had Churg-Strauss syndrome. It starts out feeling like asthma or allergies, but down below the surface, the disease inflames the body's blood vessels until they die.
Watt was lucky to have it centralize in his intestines rather than his lungs, and survived after having large sections of necrotized intestine removed. Since the surgery, he's been on a severely restricted diet to cope, and penned a memoir called Patient about his ordeal.
"Vox Celeste" Marfan's syndrome is a genetic disorder that causes an elasticity of connective tissues, and as we've pointed out before, it's actually one of the things that made composer Sergei Rachmaninoff able to play his freakishly difficult chords.
Deerhunter's Bradford Cox was also born with the condition, and his isolation and increasingly awkward appearance because of it led him to become severely withdrawn. He's learned to come to terms with Marfan's, and uses his abnormally long limbs as part of his exhibitionist performances onstage.
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