Final installment of a letter to a medical student. Read the rest of the letter:
[Part 1] [Part 2] [Part 3]
To the question of estimating what percentage of the eczema/atopy problem relates to detergents — reasonably assessing what percentage of a problem relates to one thing or another implies a broad understanding of the problem across the population. As you are probably aware because it is discussed honestly as a shortcoming in most prevalence studies, to some extent, everyone dealing with the problem of allergy and eczema sees their own little slice, including physicians in virtually all related specialties. Not everyone with eczema will see a doctor, and even if they do, they won’t necessarily continue.
In one research study from an obstetrical hospital in the UK, they managed to get over 5,000 parents to fill out detailed health questionnaires to document the association of parental eczema, hayfever, and asthma, with AD in their infants [1]. The families were coming in to the hospital related to childbirth, not an illness, so the cross-section of patients was more representative than one would find in a dermatologic or even pediatric practice.
When I solved my infant’s eczema, I had something no researcher could dream of, 24/7 access/contact with my child for months, and once we had solved the problem for our son, interactions across a representative community based on personal relationships and connections to thousands of families through various baby- and family-related social spheres (in-person and electronic). Many people asked for help when they saw what we had done for our son, and word spread. It’s the reason I had to start writing, because dealing with people individually — even just with friends — was too time consuming, though I learned a great deal.
When I first published a simple article, I received hundreds of emails in just the first weeks. Last year alone, my website had around 60,000 unique users and the blog tens of thousands of visits, and use continues to rise. Interactions in community/family spheres over the years, especially in the beginning, represented a pretty broad cross-section, and also helped inform my ideas about which modulators likely dominate the problem.
Even my experience with my website today — versus 10 years ago — is mainly with a subset of sufferers, because I try very hard only to address people already interested in taking such steps, willing to understand the information and work with their own physician in the loop. Given the relative newness of my ideas and “citizen science” on the whole, and since the strategies can be a lot of work under the circumstances, I can’t address everyone, even though everyone would likely benefit to some degree. The subset of people I’ve seen on a discussion board set up by a parent user (http://sammysskin.blogspot.com) seems to be different than my site’s typical user profile, too.
I’m quite certain the subset I see through my site is different than one would see in a medical clinic, too — frankly, many people find the site because they are fed up with the accepted allopathic approach. I usually try to help them see how they need to work with their doctors, because having qualified medical advice is vital (especially for safety and infections, really for anything medical), but I can understand people’s frustration.
Although my site strategies have not gone through a traditional study and publication cycle, I would note that neither have the typical personal product and washing recommendations most physicians make to desperate parents already, in fact when I looked, I found more support for recommending washing with traditional alkaline soaps than washing with surfactants that aren’t soap.* The recommendation to avoid “soap” (when “soap” really was soap) appears to have been borne of the marketing sector, not solid medical science, and in fact for a period, physicians recommended soaps and soap flakes over detergents for sensitive people and infants.
*It can be very tricky to find such studies because you have to assess whether researchers define “soap” and “detergent” the same way as I do. Soap and detergent are not technically precise terms, so it is often difficult to know what a given researcher means unless a paper is very specific. I hope at a minimum, our discussion highlights the need for more precise definitions of various chemicals and chemical classes in skin research.
Many people come to my site because they don’t want to just cover up the problem or use steroids. Many are searching for answers because the standard treatments don’t work anymore, or never worked for them, or people find them too burdensome or their quality of life too compromised. Unpredictability and sense of powerlessness degrade quality of life in eczema [2]. As the chief executive of the National Eczema Society (UK) reported, “… those of us who live with eczema are desperate for a cure — or at least for treatments better than those available to date.” [4]
As I’m sure you are also aware, with topical corticosteroids that are a mainstay of eczema treatment, “steroid fears” are very real and contribute to a high level of noncompliance in treatment regardless of disease severity. [2] [3]
Unfortunately, the response per papers on the subject of “steroid fears” seems to be to advise physicians to downplay the risks and consequences, a problematic recommendation from the standpoint of informed consent. Being real here, I hear from the parents who are furious with their doctors for downplaying the side effects of steroids or for recommending them even while the treatments no longer control the eczema — doctors aren’t seeing those patients. I think downplaying risks and consequences, particularly of a treatment that doesn’t fundamentally cure a condition, ultimately backfires and hurts patient-physician relationships and trust in the long run.
Compliance with traditional treatment regimens can be poor, and declines over time even when patients show objective benefits and have education about their treatment. [ref] Investigators don’t seem to understand that keeping up with such a persistent regimen is burdensome and a constant reminder of the eczema as a personal “defect,” even when it helps reduce symptoms. Fear of flares remains a constant psychological burden.
And, there is a big difference in perception between a child getting treatment to keep a problem under control that is perceived as a defect in them, and getting an environmental problem under control where the problem is then perceived as external. Even, I have to add, if the parent employing the environmental strategies also uses some steroid treatment as part of the regimen, at least there is a sense that it’s a choice and the steroid use can be limited.
Even while many studies show a parent/patient reluctance to use corticosteroids, others show parents are willing to try alternatives like special diets, extra laundry or bathing, or special clothing. [ref]
Many people come to my site because they don’t want to just cover up the problem or use steroids. It’s not just because of “fears,” whether justified or not. Again, there is a huge difference between treating someone for a problem to keep it under control, and giving them a real solution that let’s them understand and lead their lives without treatment. There is a huge difference between being at the mercy of unpredictable flares, and being able to fairly reliably predict and head off or end outbreaks. I am regularly thanked when parents get control of the outbreaks and no longer see the outbreaks as random, even if they still have to deal with them. It makes a great difference to parents to understand that the environment, not their children, is what is “defective.”
When an environmental factor is at play in a genetically susceptible population, it does not mean that the associated genes are an inherent weakness. I make this analogy on one of my blog posts: If we suddenly began making doorways shorter, so that 20% of the population had to stoop to go through, pretty soon some percentage of people would experience more frequent head injuries. While it would be possible to find and correlate genes with such injuries (tallness genes, for one), and maybe even look for therapies to suppress growth so these genetically susceptible people didn’t get so tall, ultimately the best approach is to raise the door height back to what it was.
For the children’s sense of wellbeing in growing up, it’s important for them to see themselves as whole and not fragile, even if they have to be more aware of dangers in the modern environment (for now). Many parents express gratitude once they “get” it, once they can see a connection between exposures and what happens to their child’s skin and health, even if they haven’t completely eliminated the breakouts yet.
One of the recurring themes I hear from parents is gratitude for being able to see their children with normal baby skin. You probably won’t understand this fully until you are a mother yourself, but I just received an email from a mother who used the site to resolve her first child’s horrendous eczema — only finding the site when the child was a toddler — telling me how every day she marvels at her second child’s baby skin, and how she never once had that experience when her first child was an infant. A solution to this problem is not just the absence of the suffering of eczema (and atopic manifestations like asthma), or the appropriate training of immature immune systems, it is restoring to these families, to these children, the blessings of normality they really deserve.
As you have rightly pointed out, funding for dermatological research can be a problem, especially for usually non-life-threatening problems like eczema that are perceived as less burdensome than they really are. Funding mostly comes from companies looking for monetizable treatments rather than reasons to realize these children don’t actually need treatment at all. Open source tools may be the answer, but as yet there is no accepted framework for anything equivalent to peer review and acceptance of open source innovations. However, from the standpoint of using what is GRAS to help patients now, I don’t think it’s really necessary to wait for either.
If you have patients with eczema looking for alternatives, it seems to me there is reasonable basis to suggest environmental strategies as a first line, if patients have concerns about steroids and are looking for that kind of strategy. Just as newly pregnant women are typically given a packet on important resources during pregnancies by their OB’s, a similar packet of already-uncontroversial resources for eczema patients might be helpful:
1) Doctors have for decades made recommendations regarding washing and personal care products, so this is nothing new. My site is already being recommended to patients by doctors, and is a problem-solving heuristic mainly involving healthy GRAS environmental strategies. (The article AANMA did in 2006 passed muster with a large illustrious medical board before they published it.) If you read and consider my site a useful resource, consider including a page listing the link as one possible resource.
2) Good allergists typically already make reasonable home environmental recommendations, such as allergen control (including for mold and dust mites), in the way Dr. Brazelton describes in his book Touchpoints. I was surprised in our experience at how little advance notice or preventive advice most people with eczema get on the whole issue of atopy and allergy, until those problems become serious.
There is considerable mainstream research to support general allergy-control measures in a home, yet I am surprised by how often people have no idea of the most effective and simple steps they can take to improve indoor environments. I thought I was pretty knowledgeable, and yet I, too, was surprised by what I DIDN’T know. The US EPA publishes many helpful guides, written for average consumers, on how to maintain healthy homes and solve typical home environmental health problems (two examples below), perhaps including the best links on a page of resources or even printing out the best ones would help:
http://www.epa.gov/region1/healthyhomes/pdfs/healthyhomes.pdf
http://www.epa.gov/mold/moldguide.html
3) Many physicians already recommend trying safe elimination diets since the list of typically allergenic foods is short and well-known. Giving parents a guide listing specific professionals such as nutritionists within the local medical organization, or generally recommending which specialists or written works could guide a safe and effective elimination diet would be better than just suggesting parents try it or eliminate certain foods.
4) Since the research came out, many physicians also recommend trying additional measures like probiotics. Many people then go out and try to find products that work but give up because of hurdles such as finding a dizzying array of products with other allergens in them, etc. Including a list of acceptable products or even coupons for the ones that have the fewest allergens could help people take these steps along with the others.
5) Until more research is done, where steroid treatment is desirable or necessary AND it is possible to recommend products without added detergents or allergens in them — such as topical steroid products without detergents (or compounded in Aquaphor) — it may be helpful to simply offer patients a choice of such products.
Having a packet of resources patients can look at and use their own way is, in my experience, more helpful than just making verbal suggestions. I think it also makes patients more likely to involve their doctors when they really need to.
I realize that was a long and complex answer. I felt I had to come up with a best estimate because people asked so frequently. I’m sure I’ve forgotten some of the rationale by now, but the above is much of it. I don’t think most people expected anything like a precise answer — and certainly, my estimate is pretty broad — rather, they needed an idea that trying the site strategies stood a good chance of being worth the effort. I don’t think there’s one single answer for everyone, as my letter describes, but I do think the problem-solving heuristic can be helpful — often exceedingly so — for a majority.
I hear from quite a few doctors, but I don’t hear from many medical students. To be honest, there seems to be a direct correlation between experience level/position, and willingness to review and recommend my site. Very experienced doctors seem to be unfazed by the idea of using a resource like this once they have read it and see what it is. It’s rare for a medical student to reach out as you have just done.
I hope you will continue to think about the idea of open-source innovation in dermatology, since conducting crowdsourced studies could solve funding limitations by essentially distributing costs in large clinical trials. I wish you the best in your professional life, and hope your spirit of independence and strong intellectual curiosity will help your patients as much as it will surely lead to success in whatever research area you pursue.
A.J. Lumsdaine
P.S. My site experience is a quintessential open-source innovation story. I believe many seemingly intractable disease problems could be solved given accepted frameworks for assessing and disseminating open source innovations in medicine. Beyond eczema, I have specific, more serious problems in mind but cannot write about them in the same way as they cannot be addressed from a purely environmental standpoint and I am not a doctor. And, as a non-physician outside of accepted medical circles, I have as yet no clear outlet for open-source review, acceptance, and dissemination of such proposals that would be equivalent to traditional peer review.
I believe certain medical problems have gone unsolved not because all of them need revolutionary new science — eczema certainly doesn’t need it and it’s not alone — but they’ve lacked the application of modern technical problem solving, and have suffered from low expectations for results characteristic of paradigms on their last legs.
When I still had some hope of finding funding for this, or even entering for some kind of innovation/solutions prize, I found pretty much everyone offering such funding/prizes has fairly low expectations in regards to actually curing diseases. Prizes are offered for measurement instruments, or tools for research, not for curing diseases anymore. Even the X-Prize people are offering a big prize for a measurement instrument like a Star Trek tricorder — which, don’t get me wrong, is WAY cool — but not a single offer of a prize to cure any currently-deemed incurable disease.
In many ways, medical students, especially medical students with health problems of their own, have the potential to be the greatest innovators in a modern open-source context. I have no doubt such frameworks will come to fruition. When they do, expect nothing less than a revolution in medical problem-solving. I hope it will help you and your generation to revolutionize medicine beyond our dearest imaginings.
[1] Wadonda-Kabondo, N., J. A. C. Sterne, J. Golding, C. T. C. Kennedy, C. B. Archer, and M. G. S. Dunnill. “Association of Parental Eczema, Hayfever, and Asthma with Atopic Dermatitis in Infancy: Birth Cohort Study.” Archives of Disease in Childhood 89.10 (2004): 917-21. Print.
[2] Zuberbier, Torsten, Seth J. Orlow, Amy S. Paller, Alain Taïeb, Roger Allen, José M. Hernanz-Hermosa, Jorge Ocampo-Candiani, Margaret Cox, Joanne Langeraar, and Jan C. Simon. “Patient Perspectives on the Management of Atopic Dermatitis.” Journal of Allergy and Clinical Immunology 118.1 (2006): 226-32. Print.
[3] Anderson, P. Chris, and James G. Dinulos. “Atopic Dermatitis and Alternative Management Strategies.” Current Opinion in Pediatrics 21.1 (2009): 131-38. Print.
[4] Lapsley, P. “Itching for a Solution.” Bmj 330.7490 (2005): 522. Web.
This work by A.J. Lumsdaine is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License
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7 months after starting detergent removal, I was invited on a snowshoeing trip in the mountains. The trip was in an area in which I used to cross-country ski frequently a number of years ago, and so my body was generally familiar with the terrain, conditions and weather. Back when I was cross-country skiing regularly, I was exceptionally fit and this seemed to also help mitigate the asthma, raising the threshold of physical exertion before wheezing. However, I always got asthma while skiing, and I always had to stop and take a puff or two of my short-acting inhaler, typically within 5 minutes of starting to cross-country ski, and often again later on in my 4-6 hour workout. At the time of the snowshoeing trip, I had every reason to expect to be wheezy. Not only had I become relatively out of shape, but at this point I hadn’t taken any inhalers for at least 6 months.
I brought my inhaler along just in case, but I was really curious to see whether I’d be asthmatic or not. After the initial steps, getting into the groove, I listened to my body, tentatively, half expecting to need my inhaler. No wheezing, not too much tightness in the chest. So far so good. I kept on. And on. And on. 2.5 hours into the trip, I suddenly realized, that despite climbing up and down a canyon, breaking through undisturbed snow at times, and talking while walking, I hadn’t needed my inhaler.
At the point of my no-asthma discovery, everyone on the trip was tired, but I had lots of energy because I was so excited! I wanted to try to “incite” the asthma by pushing myself to the limits of physical exertion. I didn’t think I would have many other chances to “test” the condition of my asthma. I nearly ran up a 90 foot incline to the top of a dam, so fast that it was a few minutes before anyone else in our party caught up to me after I stopped. I experienced no wheezing! I could not remember the last time I exercised hard, started breathing hard, and did not feel the familiar tightening of my chest and wheezing coming on. I was elated!
