Monday, January 31, 2011

The "itch receptor"

Another thing for me to be excited about: this Thursday, I get to talk to Gil Yosipovitch, the "Godfather of Itch," who runs a clinic at Wake Forest University and founded the International Forum for the Study of Itch. (I made him an offer he couldn't refuse.) If you have any questions for him, please ask and I will pass them along. Myself, I just want to get an idea of how his clinic operates, and find out why there aren't more of them.

Also, whether he envisions any pharmaceutical cures for itch appearing soon. Martin Steinhoff scribbled a list of possible targets in the itch pathway that one might like to shut down to reduce or eliminate itch. Here's what he wrote down, before I distracted him with another question:
  • GABA
  • GRP
  • Proteases
The "GRP" rang a bell in my memory so I looked it up. It stands for "gastrin-releasing peptide," whatever that is. What's important is that in 2007, two scientists at Washington University in St. Louis discovered that a receptor for GRP is a major gate for itch nerve impulses in the spinal cord, at least in mice. (And basic neurology isn't different in mice and humans.) I could be wrong, but I think that GRP receptor is still the prime suspect.

The scientists were able to do their experiments because they had developed a strain of mice without GRP receptors. These mice were much less likely to scratch themselves when their skin was injected with substances known to induce itch. And in normal mice, a compound that inhibits GRP receptors greatly reduced scratching behavior.

This isn't exactly breaking news, but it is good for me to know as I explore "itch centers" in the US and around the world.
* * * 
A wee  bit of business news: a small company in Seattle, recently acquired by Bristol-Myers Squibb, is developing an anti-IL-31 antibody which is now in preclinical trials for atopic dermatitis. (Now, what does IL-31 do? I always get confused by these IL-X things. It is apparently produced by Th2 cells and has something to do with inflammation.

Thursday, January 27, 2011

How an "itch center" (or clinic, really) would work

After I wrote the last post, I realized that I should clarify what I mean by "itch center." If you search for the term on Google, you don't turn up much, but I did find one indirect listing for the "Center for the Study of Itch" at Washington University in St. Louis, Missouri. It has something to do with the Washington University Pain Center. Anyway, what I mean by "itch center" is a place that primarily serves patients, rather than a pure research lab. As far as I know there is currently only one such entity in the U.S., Gil Yosipovitch's at Wake Forest University in Winston-Salem, North Carolina. And you can't find a webpage for it. How is a patient supposed to get help?

Martin Steinhoff told me that he plans to establish an itch center at UCSF--a clinic to help patients. He also mentioned, in conjunction with that clinic, that he's putting together a research center. You might be interested to know how these things get planned.

For his clinic, to begin with, Steinhoff would serve as the lead doctor with three residents working under his direction, plus one nurse. In Germany, he says, with such a setup he was able to see 50 patients in a day. At UCSF, he says he wants to think on a bigger scale, so eventually there may be several senior doctors and many residents and nurses.

As I mentioned in the previous post, Steinhoff says that at his Muenster clinic the most important feature was that patients would arrive for diagnosis and spend the next one or two weeks under close supervision so that their treatment could be adjusted according to need. In the US system this can't happen (barring unusual philanthropy)--doctors usually see ambulatory patients only for very short times, and then send them away for 4-6 weeks.

Steinhoff says that he's thought about this--the limitation is frustrating, but he thinks that he could achieve some sort of active modulated treatment by having patients join a self-help group, moderated by the clinic's nurse. The patients could check in to a website or wiki online where the nurse would be available several hours a day to check how people were doing, and in off-hours they could converse with each other in forums. I'm extrapolating here, but I expect his idea is that the patients would lend each other moral support as well as practical advice. It'd be interesting to see this in operation--how much of the forums would consist of comments like "OMG I'm so itchy" or "Just scratched, feels so goooood"? Probably knowing that the conversation was moderated by the nurse would improve the tone.

In Steinhoff's proposed itch research center, he'd again be the director, with, to begin with, two assistant professors in his laboratory. (He's an active research scientist and in fact got his PhD in biology before his MD.) I'd like to visit his laboratory sometime to see how one carries out itch experiments, but I've used up my quota of his valuable time for several months.

* * *

You may have noticed that I am posting less often at the moment. My current target is twice per week. I've been having some back trouble that may have been brought on by my enthusiastic start to blogging--until recently the ergonomics of my home computer setup were terrible, and I'm now at about 75 posts, so that makes about two days' straight worth of typing with bad posture. My physiotherapist has advised me to make several changes to my lifestyle, and seeing as I already spend 8 hours a day in front of a computer at work, it doesn't make sense to overdo it at home.

Tuesday, January 25, 2011

Martin Steinhoff plans largest itch center in the world

Today I met with Martin Steinhoff, a professor of dermatology at the University of California, San Francisco (UCSF). (He's listed as a "professor in residence," but assures me he's here to stay.)

Steinhoff plans over the next 25 years to build the biggest "itch center" in the world at UCSF. Previously he led the itch clinic at Muenster, which he believes is the largest such center in Germany. An itch center is a special clinic with dedicated residents and staff, at which patients are diagnosed, treated, and observed intensively over a period of one to two weeks, and their treatment modulated to get the itch under control.

Steinhoff came to UCSF because he was impressed with the research being done in neuroscience. UCSF is a purely medical and research campus with no undergraduates--it used to be the medical school of UC Berkeley, and although not well known to the public, it is the second largest recipient of NIH funds (presumably after Johns Hopkins in Baltimore). However, he says he is the only itch specialist currently at UCSF, although he works closely with four scientists who study pain, which shares neural pathways with itch.

Steinhoff has been impressed with the can-do, entrepreneurial spirit in California. "Here you have the possibility to build a computer company like Apple in your garage," he says. "In Germany, people expect everything from the government."

However, he prefaced those remarks with ones less likely to be repeated by American politicians. He is frustrated and unimpressed with what passes for a fragmented health care "system" in the US. Because of the power wielded by insurance companies, itch patients in particular receive substandard care. "In Germany, when a patient visits [the itch clinic], they come for one week, get a diagnosis, and we get it under control," he says. Here, you are seen for two minutes--maybe 15, at a university--you get a quick diagnosis and you're told to come back in 6 weeks. There is no time. And because of money, you cannot prescribe the optimal treatment, because of insurance." [This is true for me, actually: my own insurance wouldn't pay for me to attend Steinhoff's proposed clinic.] "

"In the US, insurance wants to prescribe the cheapest topical or systemic steroid," he says, even if the best treatment would be a large dose of (admittedly expensive) nonsedative antihistamines. [A surprise to me, this; I'm not the expert, but I thought antihistamines were not effective. Maybe just the ones I've taken.] His conclusion: "You cannot help patients because of the insurance."

Whatever your political views, you'd have to agree that the point of health care is to help the patient, and from that perspective, the current "system" is broken.

I'll give a few details of Steinhoff's proposed clinic in the next post, and how he plans to work around the limitations. I'd just like to add that he's a little mystified why eczema has such a low profile in the US, while conditions such as psoriasis that, according to him, "have much less effect on quality of life," are well-known. Once he gets his clinic off the ground, it will be only one of two such centers in the US, the other one being Gil Yosipovitch's at Wake Forest University. Two centers for 240 million people in the richest country in the world.

Friday, January 21, 2011

Most definitely no definite answer for vitamin D and eczema

As with most of the posts on this blog, I wrote the last one in a hurry--there's only so much free time if you've got a job and a commute and two kids. Being in a rush makes blogging unsatisfying as a writing exercise, both for the strength of argument and the quality of prose. A blog is nothing more than a series of first drafts, and the expression "shitty first drafts" (Google it) exists for a reason.

So I thought perhaps I'd been too quick to diss vitamin D as potentially having benefit for patients with eczema. A PubMed search turned up this review paper, which I am inclined to trust as credible for several reasons:
  1. one of the two authors is Donald Leung, head of pediatric allergy and immunology at National Jewish Health Center in Denver; editor-in-chief of the Journal of Allergy and Clinical Immunology; and principal investigator for the Atopic Dermatitis Research Network
  2. the authors cite 73 papers instead of just one or two selected to support their cause; they present a balanced view with opposing data
  3. they don't use scary headings like "Is This Nutritional Deficiency Ruining Your Heart?" or provide a convenient link to an online store with products such as krill oil, vitamin spray, and bidets.
Anyway, I learned quite a bit. In short, vitamin D deficiency is a real phenomenon in the US population. There are a number of molecular mechanisms in which a lack of vitamin D might increase the severity of eczema. And a few trials have been done with small numbers of people that show that a short course of increased vitamin D improves symptoms.

That's not enough to make me rush out and buy barrels of vitamin D though, especially since there are multiple side effects of an overdose, including kidney damage. As Caroline commented after my last post, the issue is really whether you're deficient or not, not that it's a good idea to take an excessive dose. (I sent her a copy of the paper so we can look forward to learning her perspective.)

A reading of the paper turns up a bewildering number of studies in cells and mice that produced conflicting results. E.g. mice deficient in vitamin D had helper T cell responses greatly slanted toward type 1 instead of type 2; but it's known that, in humans, eczema patients have overactive type 2 helper T cells. If you were to take that one paper as gospel, you'd try to deprive yourself of vitamin D to cure your eczema.

Another paper shows that adults who received vitamin D supplements as infants were more likely to develop atopy and allergy. But then opposing papers balance this out. Dosage and timing could be crucial.

So, as with most science, the conclusion is the familiar "more research needed."

Wednesday, January 19, 2011

Vitamin D isn't the answer

In a recent conversation with Caroline over at Fighting Eczema, she mentioned that she wanted to look into whether having low levels of vitamin D might be correlated with risk of developing eczema. The theory was her own, but she mentioned "a strong advocate for the benefits of vitamin D on the internet, Dr. Mercola." I thought I'd check the man out, since I'd seen another article or two by Mercola in the general health news.

I was seriously unimpressed. Joseph Mercola is a self-appointed "expert" on "natural health" who, in short, is a scaremonger peddling fears of modern technology and the drug industry. Natural cures are best, he says; and just in case you were wondering where to get them, you need only visit his extensively stocked online store.

He's big on vitamin D, for sure; has an entire section devoted to it. According to him, it cures just about everything. Count me a skeptic. Every doctor I've asked, and a few I haven't, has told me that anyone eating a balanced diet has no need of any vitamin supplements at all. Vitamin C, and perhaps a few others, are flushed out of your body in your urine, but the rest accumulate in your tissues. Too much of a vitamin or mineral is a bad thing, just like too little. No way would I take an excessive dose of one particular substance unless I'd been diagnosed with a severe deficiency.

(Amusing aside: in my 20s, for a short while, I took several multivitamins a day, in the belief they would make me super-healthy. I developed a remarkable case of hemorrhoids that cleared up when I stopped taking the pills.)

Caroline, I mean no offense--in the search to cure eczema for our children and ourselves, we ought to explore every avenue. But vitamin D isn't going to be the answer.

If you're interested--I recommend it--the blog Science-Based Medicine has a comprehensive and entertaining takedown of Mercola. Here's one segment. The FDA has served Mercola with two warning letters concerning unwarranted claims for seven of his products.

Tuesday, January 18, 2011

Steinhoff's 2006 itch review fascinating, useful

So in advance of meeting Martin Steinhoff, I've been reading a couple of his review papers on itch research. I am well used to reading scientific papers--the slog through the jargon and hard-to-grasp concepts. It's liberating to read a paper about a subject that touches you personally, instead of one about some anonymous molecule with an acronym like ADF46-PGL (I made that up) that is somehow linked to something that might be useful to someone someday. With Steinhoff's itch reviews, there's a fair amount of jargon, yes, but I can relate to virtually every paragraph, and I pay attention because I hope to learn tips that I can apply to my daily life. For example:
Recent results suggest that noxious heat stimuli and scratching produce a stronger itch inhibition than do noxious cold stimuli.
I've always found that a cold pack from the freezer helped kill an itch, at least for a while. Maybe I'll try a hot pack next time.

The main point I take away from the review I've just finished is that itch research is unfortunately far from being able to produce a good target for anti-itch drugs. Decades, maybe--although that review is from 2006, so the current state-of-the-art may be much further ahead; you never know. There's always the hope that an already-approved drug might turn out to have a beneficial side effect against itch. Certainly, one thing that's been discovered is that pain inhibits itch--this was discovered partly because painkiller drugs tend to make people itchy.

A major recent development is that scientists have identified specific neurons that carry itch from the skin to the spinal cord and then to the thalamus in the brain. Some of these neurons are called "histamine-sensitive itch fibers," or "pruriceptors," although there must be other itch fibers because there are many more molecules besides histamine that have been shown to induce itch.
This diversity of primary afferent "itch fibers" would nicely fit to the different submodalities of pruritis ("itch quality") observed in patients.
Exactly! Um...that is, I know I experience different kinds of itch. There's the tickly kind, like when an ant is crawling on my neck; there's a distinct itch I get from a small, active patch of eczema, on my foot, say; and there's the full-on-paroxysm that I occasionally wake up with after I've had the poor judgement to drink eggnog or eat something laced with cayenne pepper. And there are others.

As I just mentioned, there are many more itch-inducing molecules besides histamine. Steinhoff thinks that researchers have focused too much on histamine. Table 1 lists 16 different types of molecules (he calls it the "itching army") that represent the major culprits. In eczema, acetylcholine and mu-opioids appear to be more significant than the other molecules.

On to the next review, which has more gems, I'm sure.

Friday, January 14, 2011

Zema, the Warrior Princess

Voov has reached a new stage. Like HAL in Stanley Kubrick's 2001, she has become self-aware. Hidden B informs me that earlier today, Voov raised her arm, pointed at her wrist (which is always red and inflamed, because we can't put steroids anywhere near her hands) with the forefinger of the other hand, and, for the first time, spoke the word "Zema."

Zema, the Warrior Princess.
* * *
Yesterday, Caroline at Fighting Eczema posted about her son's recent scratching attack and how she has begun to suspect that dust mites might be partly responsible for his eczema. (Specifically, it's the dust mite droppings that are the allergen.) I have always been aware of the dust mite issue, but because  eczema is maddeningly inconsistent and hard to connect to any causes, even though at times it seems certain that some foods or allergens trigger flares--and because it would take a lot of time, effort, and money to attempt to control dust mites in our house, I have never done anything about them.

Vacuum? Sure, we do that once in a while. But vacuuming probably stirs up dust mite droppings and blows them into the air. Read Caroline's blog for details on what you'd have to do to begin to control dust mites.

And so it occurred to me that dust mites--and grass pollen, another thing it's virtually impossible to control exposure to--are the two most important targets for immunotherapy for eczema patients.

Three papers (here, here, and here) from the current issue of JACI show that we could expect these therapies to make it to the clinic. The grass pollen treatments are tablets, taken for about 6 months, and improved symptoms in both kids and adults by about 20% on some qualitative scale of hay fever misery. The dust mite treatments may have been injections (I don't have access to the full paper right now) and were taken over 3 years (hoo boy) but the researchers found improvements of about 45% in hay fever and 80% in asthma, so they were definitely more effective.

I'd say that the NEA should consider funding some of this research (they may already be doing so) to translate these findings into FDA-approved therapies, at least in the case of dust mites. Are the scientists considering founding a company, or patenting and licensing their discovery?
* * *

It's taken a while, but I have made an appointment to speak to Martin Steinhoff, a visiting professor of dermatology at UCSF, about the German itch center model. I'll be talking to him on January 25th. (He's visiting from the University of Muenster.) In advance of our meeting, he's given me a couple references to his papers, and I'm reading one at the moment: a review of how the skin, nervous system, and brain work together to create the sensation of itch. It's eye-opening stuff and I'll share some key points with you when I understand them! Let me give you just one quote:
"...the impression that one's skin itches is nothing but a sensory illusion created by the brain."
So, you'd think, you don't necessarily have to treat itchy skin to control itch. You could take something that acts directly on the brain. Pop a tablet, instead of smearing yourself with steroids.

Thursday, January 13, 2011

Dogs: eczema patients' best friend in more than one way

And now for something completely different...

Dog eczema!

Quite frequently I see items in my news feed about canine eczema. I haven't paid them any attention. But today I saw something worth commenting on. Imulan, a company based in Arizona, announced that it had developed a biomarker for canine eczema.

Who cares? was my first thought. But I was intrigued, because in reading the NIAMS roundtable summary the other day, I'd seen that dogs are considered a potential experimental model for human eczema. So any research done using dogs as models might not only benefit dogs, but also humans.

I wondered why it was worth anyone's time to develop a biomarker for eczema in dogs. (A biomarker is any protein or metabolite in your body whose level is correlated with your risk of developing a disease-- or the chance that you have it already. Biomarkers are emerging as a biomedical field--for example, Tethys Bioscience in Emeryville, CA is developing biomarkers for diabetes.) If you have eczema, it shows. Why do you need a biomarker?

Then I understood. Dogs scratch all the time. They get fleas, etc. They roll in their own feces and other stuff. So it's harder for a veterinarian to diagnose eczema for a dog than for a human doctor to diagnose it for a patient. A biomarker would enable the vet to make a quick, definitive diagnosis.

Imulan says that its canine eczema biomarker is based on its "T cell receptor therapeutic peptide vaccine." This opened my eyes. They're claiming to have a vaccine for eczema! Bold. I have no idea what data this is based on. Nor do I know exactly what a "TCR peptide vaccine" is.

I did a Google search and it seems that there have been a number of papers published on TCR peptide vaccines, although the ones I checked out concerned vaccines against lymphocytic cancer in mice. And those were EXTREMELY preliminary.

The idea, Imulan says, is that a messed-up T cell balance (type 1 helper vs. type 2) is at the root of eczema (this, of course, is not established in humans; the imbalance is likely a symptom, not the original cause) and so you need to cancel out, or mute, the type 2 T cells. In short, as I understand it, you vaccinate so that your body produces a lot of antibodies against YOUR OWN T cells, thus shutting them down.

This seems nutty to me, and if tried in humans, likely to lead to something like the "cytokine storm" that nearly killed the six volunteers in a 2006 trial of an experimental T cell-stimulating antibody. But Imulan claims their vaccines have shown promise in dogs.

I'll have to ferret out their data (pun intended).

Wednesday, January 12, 2011

The itch roundtable

When I heard back in December about the NIAMS (division of the NIH) itch roundtable--a discussion that involved the NEA's CEO Julie Block, a number of NIAMS directors, and a larger number of active itch researchers--I was excited that the meeting summary would be made public. I don't know why it is, but in the media you hear about eczema much more from the allergy perspective, or as if it's a cosmetic issue with dry skin, rather than the reality for a lot of us: chronic itch. If we could control the itch, we'd be less at risk of infection, we wouldn't prolong our flares, and possibly most importantly, we'd have more self-respect.

It's hard to feel like you're a grown-up when your self-control in this one dimension is no better than a three-year-old's.

The summary of the itch roundtable was recently put online (at the link above). I got there by following a link in the email the NEA sent all its members. At the end of the summary there's a long list of the participants. I plan to check out what research they're all doing.

Two things jumped out at me from the summary. The first thing is that itch research is building on the much more established field of pain research. It appears well-known that certain types of pain can inhibit itch. (And, in fact, that the same type of neuron carries both impulses.) As an eczema patient I know this very well first-hand. In fact, sometimes scratching feels good precisely because it hurts, and seems to spread a cool blanket of pain over the burning itch.

I've got a rather silly story to relate about this. When I was a teenager I discovered this pain-itch connection, and I happened to have an itchy scalp at the time. I found that a good way to relieve the itch was to pull out small clumps of hair. Ouch! you say. Ouch is right. Felt great. I did this for about a week.

The problem was that I then developed an extremely nasty case of something like eczema herpeticum--little fluid-filled blisters that spread all over my body and threatened to leave me looking sandblasted for life. Fortunately my parents took me to a doctor who prescribed some magical cream that completely reversed the infection. I have no idea what the cream was, only that it worked, and that my parents said it was "very strong." It must have been an antibiotic of some kind.

Dr. Sib, if she still reads this blog--will remember this episode. During the recovery period, I drove her crazy by picking at my scabs.

So don't try that at home.

The second thing that jumped out at me from the summary was that, although mice are the standard laboratory model animal for many human diseases, there are several key reasons why itch in mice and humans is substantially different at the molecular level and at the level of the skin as an organ. Therefore, it's unlikely that a mouse model will be developed for human itch. To quote NIAMS:
  • Itch- and pain-specific neurons and receptors identified in mouse models may not have the same distinct functions in humans.
  • Structural differences in mouse and human epidermis may create differences in itch transduction, and downstream cellular activity (e.g., protease production).
  • Overexpression of many cytokines in mice will induce non-specific itch, whereas the itch mechanisms in humans appear to be more complex.
  • Current mouse models correspond to acute itch, whereas clinical itch tends to be chronic.
  • Linking itch mechanisms from animal models to the spectrum of itch descriptions in human patient populations can be challenging, because some behaviors in animal models, such as scratching, licking, and biting that are attributed to the condition may be unrelated to it.
These complications with animal models will slow itch research. But pain research has faced similar hurdles, and is more advanced as a field, so we can hope the scientists can piggyback their work on existing pain research.

Tuesday, January 11, 2011

A close-up look at immunotherapy

January's issue of the Journal of Allergy and Clinical Immunology is dedicated to immunotherapy. To be honest, the first time I heard of immunotherapy, I thought it was a quack treatment (it didn't help that what I'd heard of was sublingual immunotherapy, and the point of the author was that because the FDA hadn't yet approved it in the US, it must be too effective). But the more I learn about it the more I find that it is a long-established therapy with proven results. You should read the issue's editorial, which summarizes immunotherapy over the past 100 years.

What did I learn from this issue? (Not: what is news to everyone; what was news to me.) First, it seems that immunotherapy is largely directed at allergic rhinitis, or hay fever, caused by grass pollen; that, in the US, the standard method is repeated injections over a long period, from four months to three years; that sublingual immunotherapy is widely practiced in Europe, and appears safe and effective; and that trials of therapies for other allergens such as cat dander and dust mite droppings are being conducted and show promise.

For now let's leave aside the issue that doctors don't seem to be prescribing immunotherapy for eczema patients. Say it were available. What then?

The problem for me is that I don't know for sure what allergens cause my eczema. I know that my skin prick test, 10 years ago, showed that I reacted to a bunch of things including cat (at least, one cat allergen), egg white, and rye grass. But does that guarantee that, say, rye grass pollen is a major factor in my eczema during the period that rye grass pollen is in the air? Everything I've read regarding food allergies says that skin prick tests are not diagnostic, and that the gold standard is to lay off the offending food and see if the problem goes away. There's no good way to try an avoidance diet with pollen or dust mites.

An aside: the reaction I get in the spring and summer, which I attribute to pollen, is quite different from the eczema I experience on my hands, arms, scalp, etc. In the summer, on both east and west coasts, I get red, inflamed skin on my face in a butterfly pattern. It's distinctive, and out there in the open for everyone to see. I saw the same pattern once on someone else's face.

One thing I am sure of: Claritin and Allegra, the over-the-counter antihistamines marketed for hay fever, do absolutely nothing for me.

Would I undergo injection immunotherapy, a long, arduous, and (in the US) expensive procedure, in the hope that 1) the thing I'm getting injected with is a major contributor to my eczema and 2) the therapy works for me? No, I wouldn't. And I do suspect that at least one form of pollen gives me trouble.

But I would take a course of immunotherapy tablets orally (or sublingually). That would not seem like a waste of time, nor would it be hard to get a kid to take them. One good thing is that grass pollens are, apparently, "cross-reactive," which I read as meaning their allergens are similar enough that if you induce tolerance to one, you induce tolerance to the rest of them. So you don't have to take more than one type of allergen as immunotherapy.

Reading the editorial, I did learn that grass pollen tablets are not effective if you take them as only one component of a mix of allergens in immunotherapy. Here's another difference between the US and Europe: in the US, a multiallergen mix is a common approach, while in Europe, immunotherapy for a single allergen at a time is the norm. (Any experts or Europeans are free to correct me on this.) So, it does appear that the US is lagging Europe in easy, effective immunotherapy.

When will we see immunotherapy applied to eczema? Is there anywhere in the world where it already is?

Monday, January 10, 2011

A day at the geneticist

Cindy posts that her family's been having a hard week. I do admit I've wondered how it goes in larger families; once one child comes home with a flu or something, does that inevitably means it goes around and everyone gets it? Even in our family of four, often just because a kid has a cold doesn't mean that the parents will get it, but it's almost guaranteed that the other kid will pick it up. Voov acquired a viral fever from her cousin at Xmas, and then had some congestion, so we had to have the humidifier on every night. We were going to put the humidifier away, but then Shmoop started getting congested too. And now he most likely has an ear infection. (And a rare, for him, incidence of eczema behind his knees.) The fun never stops!

Voov's eczema has been moderate for a while, so that's why I haven't mentioned it. Some on her scalp though. Whenever she gets stressed about anything, even momentarily, her hands shoot up to her head and she starts scratching away. I have to laugh because I do the same thing, even though I'm all grown up. It's a reflex.

Eczema isn't the only nonstandard feature Voov came equipped with. She's also had a few weird things with her eyes; she took a long time to learn how to walk and talk; and her face looks a little odd--her forehead's kinda bulgy, and her eyes look far apart. Taking everything together, her pediatrician advised us to get a genetic consult to determine whether she might be suffering from some syndrome. So that's what we did today-- went in for the consult.

We saw an MD and a genetic advisor, who asked us all kinds of questions about medical conditions in our families (we had also come with a stack of photos of family members so the docs could compare Voov's face with the photos) and took measurements of length ratios of her fingers to palms; torso to legs; pupil-to-pupil vs. width of the bridge of the nose, etc. At the start, the docs were almost too caring and friendly--it was unnerving, like they were preparing for us to freak out if they found something was wrong. But in the end their initial conclusion was that Voov had no obvious syndrome (although the bridge of her nose is very wide). Which was a huge relief, of course. However, they did suggest that we get done a procedure called "array comparative genomic hybridization," which I'd never heard of, and which consists of comparing stretches of Voov's genome to standardized DNA from "normal" people and looking for deletions and insertions.

Since there's no pressing need to get this done, I'm actually not keen on it. I could imagine that the test might turn up some deletion or insertion that might be associated with a fractionally increased risk for some condition, and then we'd just have something new to worry about. Hidden B wants to get it done, though. She says she wants to know, and that we might find out that (for example) we should get Voov's heart checked out, or at the very least, we'd be contributing her genetic information to a databank that would help other parents.

I can't really argue otherwise-- if there's something definite we could act on, we need to know. The thing is, what's more likely is that there won't be anything definite, or there might be something definite that we can't do anything about. I know that much is true about genetic information.

Friday, January 7, 2011

Ain't he cute?

Not too much to post tonight-- I'll note that the current issue of the Journal of Allergy and Clinical Immunology is dedicated to immunotherapy, and there's an interesting review of what the future may hold, as well as a number of articles about clinical trials of immunotherapy for allergens important to eczema, including timothy grass and cat dander. Can't wait to read the papers! --but haven't had the time.

Check this photo out. Who's this handsome fella? Yours truly, Spanish Key, Christmas 1972. My mom sent it to me recently. For me it's particularly interesting because it's really hard to see any traces of eczema on the exposed skin. There's some healing scabs on my left foot. Maybe the photographer airbrushed the shot!

There's no denying that I've had eczema as long as I can remember, so I'm interested to see a baby photo of me that looks so...normal. 

Thursday, January 6, 2011

A Canadian sister of the NEA

Yesterday I was talking about how so many "news" articles about eczema are of the "eczema is..." variety. Here's one such: "Winter brings itchy, scratchy woes to sufferers of eczema," courtesy of Now, being Canadian (as well as American) and having spent eleven years in Saskatchewan, I can attest that Canadians know winter, and that winter indeed brings on the misery. There are two reasons, I think: once everything freezes, the air becomes very dry and sucks moisture out of your skin; and inside, the air from central heating dries you out too. Try that for five or six months of every year.

The article isn't really news, and the author isn't well-informed ("An allergen-- and there are many, including harsh soaps, perfumed items, fabric softeners, dust mites and certain foods...") but it did contain a nugget that was news to me. It introduced me (and, hence, you) to the Eczema Society of Canada, a nonprofit sister of the National Eczema Association. You have to check out the ESC's website. It's very well done. Their mission is to educate sufferers and to increase public awareness of the disease, and they're clearly doing both.

Another interesting point: the ESC website has a section devoted exclusively to hand eczema. I don't know why this is-- is hand eczema of particular interest to the society's board? I have eczema on my hands, but I also have it virtually everywhere. I guess certain people must subject their hands to stresses while doing their jobs-- maybe they have to wear rubber gloves-- I know a former dentist of mine had trouble with his latex gloves.

In the past few years a specific treatment for hand eczema has been developed by the Swiss company Basilea. The drug is aliretinoin and the trade name is Toctino. A business news item of note, from Bloomberg: apparently the stock of Basilea, which is a midsize company, just took a big jump because an investment research firm decided Basilea was undervalued and ripe for a takeover. Part of Basilea's value stems from $130 million it won in a suit against Johnson & Johnson because J&J mismanaged clinical trials of another Basilea drug. J&J, you may know, owns Aveeno.

Why should we care about these details of the business world? Well, I like to know stuff, and while I generally find business news boring, somehow it's more interesting when it involves companies that make products that I use. Also, if you want to know about emerging eczema treatments, the business section is where you should look. Any treatments that qualify as eczema "cures" are going to have to be made by companies for a profit.

And the companies that innovate the cures will be small ones-- that is how innovation happens in pharma-- and then big pharma, like J&J, is going to buy the small companies. So I like to know what's going on both at the small and big ends of the eczema therapy market.

Wednesday, January 5, 2011

Cryptic children

So I read all of the backlogged eczema news from the holidays. Quite remarkable: there wasn't anything worth talking about. A trawl of the internet at any given time turns up a host of hits for eczema, 50% of which are "eczema is..." explanations for the lucky people who don't know what eczema is; 45% of which are miracle cures; and 5% of which are Yahoo Answers postings along the lines of "OMG i have exsema on my face so gross what can i do about it." Every few days, you see something interesting. But not over the past two weeks, apparently.

And so today I muse: One of the more difficult things about having a very young child with eczema is that they can't explain what they're feeling. Voov is about 18 months and she's just learning to talk, and a lot of the things she says come out garbled. We think she understands most of what we say-- but her answer to any question is usually "yes." What are we to make of it, then, when she starts writhing and crying when we put CeraVe (unscented moisturizer) on her, and she can't tell us why? We ask "is it cold?" "Yes." "Does it sting?" "Yes." Of course, you get the same answer if you ask if it's warm, or if it smells like roses.

I put the CeraVe on myself, and didn't feel anything. But is her skin the same as mine? It must be much more sensitive. As far as we know, CeraVe is the best thing we could be putting on her, and it doesn't raise any irritation.

Lately, she's been learning how to manipulate us, especially where her brother is concerned. She likes to yell "Shmoop!" in a loud, anguished voice, and enjoys bringing her parents' wrath down like artillery on the competition. Perhaps she likes the attention she gets when she complains about CeraVe. It's hard to tell.

Tuesday, January 4, 2011

New Year's resolutions? Ditch the coffee and candy

How are you all? Anyone make any New Year's resolutions?

I didn't. Forgot to, actually. New Year's isn't as exciting as it once was. Since we had our first kid, we've been in bed well before midnight every Dec 31.

In past years, I made a number of resolutions. Most of them had to do with eczema. They were along the lines of "won't scratch so much." I was no more successful than people who resolve to lose weight and take out gym memberships. My father-in-law has a great cartoon from the New Yorker-- a bunch of blobs of fat out for a jog (they may have some label like "Your Lost Weight") and one turns to another and says "It's about time to head back."

One thing I do have to do, though, is kick the addiction to sugar and caffeine I reacquired over Christmas. We got a new coffeemaker--Hidden B likes it every day, and I indulge on Sundays normally, but had several cups a day over the last week--and because I ate so many chocolates, I developed a craving that would hit me every afternoon around 3. I know neither sugar nor caffeine are good for eczema. So: away with ye, coffee and candy!

The first work week after the holidays has been busy and we've had a series of minor crises in the house (both kids are sick; car trouble; Hidden B working out bugs on her new Android phone) so I'm not up to the minute on eczema news. Let me get back to you when I am. I'm also hoping in the near future to talk to a philanthropist about fundraising strategy, and to have a conversation with UCSF's Martin Steinhoff about itch centers in Germany.