What's Wrong With Summer Stiers?
February 22, 2009 8:43 AM Subscribe
What's wrong with Summer Stiers? "She has suffered retinal bleeding, seizures, bone death and kidney failure. But no one knows what’s really wrong. Now a team of medical experts is trying a new way to diagnose what ails her — and others who are suffering from mysterious diseases." New York Times Magazine article about The Undiagnosed Diseases Program at the National Institue of Health.
The New York Times might as well not exist for me. Any links to the source material that actually wants me to read it?
I had a "close ended, undiagnosed" illness over 20 years ago. Doctors came in from all over. I had hobbyist doctors requesting my medical records. They never figured it out. I was sick for like 6 months, so I think I'll wait until this trickles out into other media sources.
posted by cjorgensen at 8:55 AM on February 22, 2009
I had a "close ended, undiagnosed" illness over 20 years ago. Doctors came in from all over. I had hobbyist doctors requesting my medical records. They never figured it out. I was sick for like 6 months, so I think I'll wait until this trickles out into other media sources.
posted by cjorgensen at 8:55 AM on February 22, 2009
I have no idea why, but I have no problem accessing NYTimes pages. As far as I know I don't have an account. Anyway, mods, any chance you could swap out my link with the general one provided by Rhomboid?
posted by billysumday at 9:00 AM on February 22, 2009
posted by billysumday at 9:00 AM on February 22, 2009
Try this link to the story. It worked without registration in Google Chrome incognito mode, should it be wide open to readers.
I read the article this morning (on paper!) and found it interesting. It lacks the usual act 3 dramatic solution to the Summer's problem, but this is reality, not the movies.
The ability to start to diagnose problems at the genetic and molecular level will be huge in the future as medicine will be able to determine what is causing problems, but what is the best treatment based on an individual's DNA.
posted by Argyle at 9:03 AM on February 22, 2009
I read the article this morning (on paper!) and found it interesting. It lacks the usual act 3 dramatic solution to the Summer's problem, but this is reality, not the movies.
The ability to start to diagnose problems at the genetic and molecular level will be huge in the future as medicine will be able to determine what is causing problems, but what is the best treatment based on an individual's DNA.
posted by Argyle at 9:03 AM on February 22, 2009
Could it be lupus?
posted by Ian A.T. at 9:14 AM on February 22, 2009 [2 favorites]
posted by Ian A.T. at 9:14 AM on February 22, 2009 [2 favorites]
Could it be lupus?
From the article:
. . . Stiers was told to go home and wait for her blood pressure to return to normal, but it never did. She was profoundly anemic, so she was hustled over to cancer specialists to be tested for leukemia or other bone-marrow cancers. She developed joint pain, so she was evaluated for autoimmune disorders like lupus and rheumatoid arthritis. She took Vioxx and Celebrex for the pain, but that led to uncontrollable vomiting. She stopped the painkillers and took steroids when the vomiting persisted.
It was two years before she was evaluated by a kidney specialist. He took a biopsy of Stiers’s kidneys and found that they looked odd, flecked with strange filamentous material whose origin no one could place. Within a year, Stiers’s kidney function declined, and she suffered from near-constant headaches, vomiting and diarrhea. Always slim, she lost 20 pounds. She was placed on kidney dialysis in October 2003. She immediately felt better and has been on dialysis ever since.
In the following years, new problems would emerge in the “cascading collapse.” Bleeding on the retina of her left eye, worsened by the blood thinner she took when she was on hemodialysis. Multiple bleeding sites in her brain, accompanied by areas of calcification, one or both of which probably caused her seizures. Pain and weakness in both legs, eventually diagnosed as avascular necrosis — bone death because not enough blood was reaching her extremities. Intestinal bleeding. Cessation of menstruation sometime in her late 20s. Insertion in 2007 of the vagus-nerve stimulator to stop the seizures. The emergence in her head of venous lakes, which are benign tumors caused by collapsing capillaries, accompanied by a palpable softening of her skull that Stiers calls “my sinkhole.” Development of dark, scaly patches on both legs, beginning in 2007, so rigid that it feels as if her legs are sheathed in stone, so painful she is forced to spend some days in a narcotic fog. . . .
posted by billysumday at 9:18 AM on February 22, 2009 [1 favorite]
From the article:
. . . Stiers was told to go home and wait for her blood pressure to return to normal, but it never did. She was profoundly anemic, so she was hustled over to cancer specialists to be tested for leukemia or other bone-marrow cancers. She developed joint pain, so she was evaluated for autoimmune disorders like lupus and rheumatoid arthritis. She took Vioxx and Celebrex for the pain, but that led to uncontrollable vomiting. She stopped the painkillers and took steroids when the vomiting persisted.
It was two years before she was evaluated by a kidney specialist. He took a biopsy of Stiers’s kidneys and found that they looked odd, flecked with strange filamentous material whose origin no one could place. Within a year, Stiers’s kidney function declined, and she suffered from near-constant headaches, vomiting and diarrhea. Always slim, she lost 20 pounds. She was placed on kidney dialysis in October 2003. She immediately felt better and has been on dialysis ever since.
In the following years, new problems would emerge in the “cascading collapse.” Bleeding on the retina of her left eye, worsened by the blood thinner she took when she was on hemodialysis. Multiple bleeding sites in her brain, accompanied by areas of calcification, one or both of which probably caused her seizures. Pain and weakness in both legs, eventually diagnosed as avascular necrosis — bone death because not enough blood was reaching her extremities. Intestinal bleeding. Cessation of menstruation sometime in her late 20s. Insertion in 2007 of the vagus-nerve stimulator to stop the seizures. The emergence in her head of venous lakes, which are benign tumors caused by collapsing capillaries, accompanied by a palpable softening of her skull that Stiers calls “my sinkhole.” Development of dark, scaly patches on both legs, beginning in 2007, so rigid that it feels as if her legs are sheathed in stone, so painful she is forced to spend some days in a narcotic fog. . . .
posted by billysumday at 9:18 AM on February 22, 2009 [1 favorite]
If I'm not mistaken, I believe Mr. A.T. was hoping for the response "It's never lupus."
posted by Johnny Assay at 9:20 AM on February 22, 2009 [3 favorites]
posted by Johnny Assay at 9:20 AM on February 22, 2009 [3 favorites]
Could it be lupus?
Is that a reference to a certain diagnostician?
"Hello, sick people and their loved ones! In the interest of saving time and avoiding a lot of boring chitchat later, I'm Doctor Gregory House; you can call me "Greg." I'm one of three doctors staffing this clinic this morning. This ray of sunshine is Doctor Lisa Cuddy. Doctor Cuddy runs this whole hospital, so unfortunately she's much too busy to deal with you. I am a board certified diagnostician with a double specialty of infectious disease and nephrology. I am also the only doctor employed at this hospital who is forced to be here against his will. That is true, isn't it? But not to worry, because for most of you, this job could be done by a monkey with a bottle of Motrin. Speaking of which, if you are particularly annoying, you may see me reach for this: this is Vicodin. It's mine! You can't have any. And no, I do not have a pain management problem, I have a pain problem... but who knows? Maybe I'm wrong. Maybe I'm too stoned to tell. So, who wants me?"
posted by Ber at 9:23 AM on February 22, 2009 [2 favorites]
Is that a reference to a certain diagnostician?
"Hello, sick people and their loved ones! In the interest of saving time and avoiding a lot of boring chitchat later, I'm Doctor Gregory House; you can call me "Greg." I'm one of three doctors staffing this clinic this morning. This ray of sunshine is Doctor Lisa Cuddy. Doctor Cuddy runs this whole hospital, so unfortunately she's much too busy to deal with you. I am a board certified diagnostician with a double specialty of infectious disease and nephrology. I am also the only doctor employed at this hospital who is forced to be here against his will. That is true, isn't it? But not to worry, because for most of you, this job could be done by a monkey with a bottle of Motrin. Speaking of which, if you are particularly annoying, you may see me reach for this: this is Vicodin. It's mine! You can't have any. And no, I do not have a pain management problem, I have a pain problem... but who knows? Maybe I'm wrong. Maybe I'm too stoned to tell. So, who wants me?"
posted by Ber at 9:23 AM on February 22, 2009 [2 favorites]
"You haven't ruled out sarcoidosis, have you?"
"What? We haven't even considered that route! Besides, what if it's not even that at all?"
"Well, at least then, you'll have actually ruled out sarcoidosis, and I'd still say you an idiot."
posted by Smart Dalek at 9:25 AM on February 22, 2009
"What? We haven't even considered that route! Besides, what if it's not even that at all?"
"Well, at least then, you'll have actually ruled out sarcoidosis, and I'd still say you an idiot."
posted by Smart Dalek at 9:25 AM on February 22, 2009
You know what? I'm sorry for posting that. I'm serious: it was the sort of pointless first-ten-comments joke, based on a show I can't stand, and posted quickly (with no intention of reading the article) just so I could get the lulz and the favorites before anyone else could. I hate it when others do this, and think that it lowers the discourse of the site, and I've created an extensive killfile dedicated to ignoring users whose only purpose as community members is to pollute the site with their lame knee-slappers. Worse, it appears to have derailed the conversation...hopefully only temporarily. Anyway, yeah: sorry.
posted by Ian A.T. at 9:43 AM on February 22, 2009 [9 favorites]
posted by Ian A.T. at 9:43 AM on February 22, 2009 [9 favorites]
And anyway, the article specifically addresses House as fantasyland.
posted by Rhomboid at 9:49 AM on February 22, 2009
posted by Rhomboid at 9:49 AM on February 22, 2009
If all you could see were her breasts, you would think she were perfectly fine.
That is such an unnecessarily creepy way of starting the story.
posted by betweenthebars at 10:10 AM on February 22, 2009 [26 favorites]
That is such an unnecessarily creepy way of starting the story.
posted by betweenthebars at 10:10 AM on February 22, 2009 [26 favorites]
The article actually is refreshingly honest about the limits of medicine for those unlucky enough not to get a known (or easily recognized) disease. It alludes to the ruling-everything-out phase. It's also cool that her general practice doctor get some credit for helping her deal with all the specialists somewhat. That isn't always given.
Summers pretty much knows a cure is unlikely; she asks how she can donate her body to science.
posted by ejaned8 at 10:23 AM on February 22, 2009
Summers pretty much knows a cure is unlikely; she asks how she can donate her body to science.
posted by ejaned8 at 10:23 AM on February 22, 2009
So far this group has had exactly two successes, both exotic forms of MS.
I don't think that casts doubt on their mission at all, however. Diseases are very formidable opponents at all levels, including the intellectual.
posted by jamjam at 10:27 AM on February 22, 2009
I don't think that casts doubt on their mission at all, however. Diseases are very formidable opponents at all levels, including the intellectual.
posted by jamjam at 10:27 AM on February 22, 2009
One of the patients at my clinic got accepted into the program. They used to go to Mayo or to Denver (at least in our speciality) and now this... One of the tricky parts is that the more patients hear about programs like this, the more they expect from any MD. Some patients get it - right now, we can only go so far, like in the article - and others have House expectations.
Still, I'm hopeful about the program from a research point of view, though they don't blatantly mention the link between how gene thereapy is lagging, so even if we find the genetic problems we can probably only do supportive care. You never know, though. That's why science is awesome.
posted by cobaltnine at 10:35 AM on February 22, 2009
Still, I'm hopeful about the program from a research point of view, though they don't blatantly mention the link between how gene thereapy is lagging, so even if we find the genetic problems we can probably only do supportive care. You never know, though. That's why science is awesome.
posted by cobaltnine at 10:35 AM on February 22, 2009
Why not try some "open source" medicine? Setup a website and, with patient consent, publish all their medical records & test results online. Maybe even post some bounties for people able to come up with novel theories or solutions
posted by crayz at 10:44 AM on February 22, 2009 [1 favorite]
posted by crayz at 10:44 AM on February 22, 2009 [1 favorite]
I've never seen a retraction on a joke before, particularly not an amusing one.
Don't beat yourself up, Ian, it was inevitable. I love House, and was excited to read this precisely to see the difference between the tropes of the show and the real difficult work of real world differential diagnosis on weird diseases. It's precisely the difference between Sherlock Holmes and actual police work.
posted by Potomac Avenue at 10:45 AM on February 22, 2009
Don't beat yourself up, Ian, it was inevitable. I love House, and was excited to read this precisely to see the difference between the tropes of the show and the real difficult work of real world differential diagnosis on weird diseases. It's precisely the difference between Sherlock Holmes and actual police work.
posted by Potomac Avenue at 10:45 AM on February 22, 2009
I really want to read that article but I can't get past the jacked up opening.
posted by serazin at 11:22 AM on February 22, 2009
posted by serazin at 11:22 AM on February 22, 2009
I read this article yesterday, and it is really worth it. Pretty amazing to hear the story of someone who has just had one medical problem after another that is virtually unexplainable. Reminded me of the Todd Haynes movie Safe with Julianne Moore.
posted by E-Boogie at 11:31 AM on February 22, 2009
posted by E-Boogie at 11:31 AM on February 22, 2009
[...] they don't blatantly mention the link between how gene thereapy is lagging, so even if we find the genetic problems we can probably only do supportive care.
I thought the article was actually pretty explicit about that, that was one of the things I liked about it. It was a fascinating insight into a part of medicine I'll (hopefully?) never get to see in real life. And I must say, I was rather impressed by the patient's resilience - it sounds like she's had rather a tough go at life, and the fact that she's able to draw some strength and meaning from her own possible long-term contribution to medicine is kind of inspiring.
posted by you're a kitty! at 11:31 AM on February 22, 2009
I thought the article was actually pretty explicit about that, that was one of the things I liked about it. It was a fascinating insight into a part of medicine I'll (hopefully?) never get to see in real life. And I must say, I was rather impressed by the patient's resilience - it sounds like she's had rather a tough go at life, and the fact that she's able to draw some strength and meaning from her own possible long-term contribution to medicine is kind of inspiring.
posted by you're a kitty! at 11:31 AM on February 22, 2009
(If this were written about a man.)
posted by katillathehun at 1:38 PM on February 22, 2009 [1 favorite]
crayz: one guy has tried to start one, I posted about him recently
http://www.metafilter.com/78813/DIY-DNA-research
posted by jacalata at 4:41 PM on February 22, 2009
http://www.metafilter.com/78813/DIY-DNA-research
posted by jacalata at 4:41 PM on February 22, 2009
aren't there editors at the NYT? this piece read like the expected drivel from a high school creative writing class.
posted by kitchenrat at 4:51 PM on February 22, 2009
posted by kitchenrat at 4:51 PM on February 22, 2009
IANAD, yet from an armchair perspective I'm torn between looking for the single bullet theory versus compound systemic diagnoses. I'm also in awe of the body and, despitegreat advances, there's still so much we don't know.
posted by moonbird at 6:32 PM on February 22, 2009
posted by moonbird at 6:32 PM on February 22, 2009
I was sick with an undiagnosed illness for nearly two years. The doctors put it down to a mystery illness I picked up while in hospital with an abscess at the back of my throat which required me to be on IV antibiotics for 7 weeks. All conventional medicine failed - I was on uppers to combat narcolepsy, downers to sleep. Nothing to "cure" me - only to treat the many and bizarre symptoms.
Finally, I saw a doctor who specialized in alternative medicines - cured my symptoms in under three months and gave my life back to me and my kids. And all done by using mushrooms, herbal remedies, animal products.
I think the root cause of many of the unclassified diseases and conditions these days comes from the many toxins in our environment. Until that is addressed, we will continue to see these illnesses. Why try to cure cancer, without looking at why we get it in the first place? There is no silver bullet (or in this case, silver pill) that will fix the problem without addressing the cause, IMHO.
posted by malarky at 11:02 AM on February 23, 2009
Finally, I saw a doctor who specialized in alternative medicines - cured my symptoms in under three months and gave my life back to me and my kids. And all done by using mushrooms, herbal remedies, animal products.
I think the root cause of many of the unclassified diseases and conditions these days comes from the many toxins in our environment. Until that is addressed, we will continue to see these illnesses. Why try to cure cancer, without looking at why we get it in the first place? There is no silver bullet (or in this case, silver pill) that will fix the problem without addressing the cause, IMHO.
posted by malarky at 11:02 AM on February 23, 2009
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posted by lee at 8:50 AM on February 22, 2009