Ankylose This! Living with Ankylosing Spondylitis

Thursday, May 18, 2006

Rare Disease Clubhouse

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.

Comments on this post

  • I have had minor symptoms of AS my whole life- but it never became bad enough for me to know something was wrong until about a year ago. I have just about all of the symptoms associated with it, and the pain is really intense. Though I have yet to meet with a rhuematologist my HLA-B27 came back positive. I have never felt that death was lurking- that person is STOOPID!!! ...however, concerning the pain meds. I have been on flexeril, robaxin, and I have tried vicodin for pain releif, none of them seem to take the pain away- I would say that they more like... take the edge off a little. Because the pain is still there but it usually keeps me from tears.

    Posted by Anonymous Casey (5/31/2006 2:43 AM)  

  • WOW! I have never seen such a description of AS or any of the spondies. If I didn't know the real story of AS I would be extremely depressed. I think some people prefer to become victims needing sympathy rather than just be real people coping with a real disease.

    Posted by Anonymous Anonymous (5/23/2006 4:04 PM)  

  • I am a youngin with AS and, while the pain is violently excriciating, I have been under a solid pain treatment for some time. Methatrexate for the disease, and methadone for the pain has been working fantastic for me for three years now. My sacroilliac joints had fused already by the time I was 23, and now at age 26, the disease has been stopped from progressing any further.

    I have been told by every rheumatologist I have seen that my lifespan is not at all reduced by either my disease, or my medication. The QUALITY of life won't be as great as others, but we are CERTAINLY not dying.

    Totally a good call on the bullshit, man. If we ever want people to take us seriously, we have an obligation to "thumbs down" this kind of crap.

    Posted by Anonymous Anonymous (8/31/2006 3:18 PM)  

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