An article about a support group called the Rare Disease Clubhouse is giving me pause; either the reporter isn't taking good notes, the person in question has a case of AS several orders of magnitude worse than anything I've ever encountered, or there's some serious bullshit going on. Questionable text in boldface:
Woodruff suffers from ankylosing spondylitis, an autoimmune disease that is causing her bones to fuse together. There is no cure for AS, and medication required to slow the progression of the disease costs more than $450,000 a year.
Bullshit. The
TNF-alpha meds -- Enbrel, Remicade and the like -- run about $15,000 a year at most. This is off by a factor of
thirty. Of course, it depends on what else is being taken:
"Morphine, methadone, hydrocodone, penteramine, the hardest narcotics known to man don't put a dent in the excruciating pain welding my bones together," Woodruff said. And "you'd be surprised how ashamed people get when a doctor gives them a prescription for opiates," strong drugs that still afford little relief for intolerable pain.
While I know there are many people out there with a worse case of
AS than I have, it does seem a bit much to declare that drugs used to treat pain in dying cancer patients are ineffective in a non-fatal arthritic condition. I'm sorry, did I say non-fatal?
Even when medication does ease the pain, the knowledge that death is looming has a heavy psychological toll.
Unless this is out of context, and she's referring to rare illnesses in general, this is
unbelieveable bullshit if it's referring to
AS. From what I understand,
AS-related complications have occasionally been fatal -- and it's not like the
NSAIDs I'm taking don't have their own risks -- but at no time have I ever been made to feel that I was living under a death sentence.
A serious case of hyperbole, here. I know it's hard to explain our disease, and I know it's easy for the people around us to minimize its severity because we "don't look sick," but there's a difference between emphasis, exaggeration and outright fabrication.