Monthly Archive for July, 2014

Letter to a Medical Student — What % of Cases are From Detergent? — Part 4

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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Letter to a Medical Student — What % of Cases are From Detergent? — Part 3

I’m afraid I don’t keep track of citations electronically; I will add in citations after the last post.  There will be at least 4 parts.
AJ

[Part 1]  [Part 2]  [Part 4]
Part 3:

So when I say 25-60% of eczema cases result from detergents, I’m really considering the commonality of circumstances under which detergents would likely be the overwhelming factor in the outbreaks. These circumstances vary.

Because adults often have more complicated health pictures, and because they have naturally less permeable membranes, I would expect detergent as the overwhelming influence in a smaller percentage of cases than for infants or children. For infants, with their far more permeable skin and their still-training immune systems, the percentage is far higher.

Although, as I said, sometimes people can resolve the outbreaks by addressing one modulator or another, or all of them at once if relevant — the primary ones being detergents, environmental (or internal) mold/fungal/yeasts (or, for the internal, let us say, significantly imbalanced microbiome and consequences), or (typically certain protein) foods, or even in some cases the state of the immune system or membranes (skin, lung, and/or gut) health, because it’s all related — I think generally it’s possible to estimate how often the different major modulators dominate.

As you know, a number of studies have shown that pregnant women given beneficial bacteria (probiotics) during pregnancy reduced the rate of eczema in their infants by roughly 20%. [1]   It is my belief that these cases are the ones in which an imbalanced microbiome /fungal modulator would dominate had the eczema developed. Probiotics do more than just compete with fungal organisms, Lactibacillus has also been shown to repair the gut barrier. [2] (Also an important tangent I won’t go into, but this relates to the role of bio-surfactants and how environmental syndets interact.) Not that removing external detergents wouldn’t help those who would have developed eczema absent the probiotics— and there is overlap in the environmental strategies, relating to gut/membrane health as well — but for this segment of infants, about 20-30%, I feel the evidence suggests the fungal modulator dominates.

My observation from experience is that those for whom food is the overwhelmingly dominant factor is about 10% of cases. This is not a hard and fast number, it’s just based on experience, and could change based on conditions. As you know, even the rates of eczema around the world continue to change rapidly.

Other studies tangentially suggest roughly the same proportions: “…two-thirds of patients with atopic dermatitis have no measurable allergen-specific IgE. Are we not just measuring the right IgE? Perhaps, but not likely, considering patients with X-linked agammoglobulinemia (a disease in which patients have almost no IgE) commonly develop atopic dermatitis.” [3] (Note: IVIG, at least at the time of this paper, is normally processed with detergents and patients with X-linked agammaglobulinemia, I believe, need regular infusions. Again, not to go into a long discussion, but write back if you don’t see the applicability here.)

Noted Harvard pediatrician Dr. T. Berry Brazelton, whose writings in his book Touchpoints [4] gave me the spark that led to my own solution, observed in his book that he could prevent most cases of childhood eczema by identifying atopic parents and having them implement general allergy-healthy-home practices and avoid using detergents with their infants. I asked him just as you have asked me, on what research he based his recommendations, but he said it was just based on decades of medical practice and observation.

In his day, of course, there were fewer sources of syndets in home environments, and they tended to be less powerful. Given the instructions he gave, he would have been addressing the two most significant modulators. Given that this eliminated most cases of eczema — and considering the environmental differences between then and now — I feel his experience further corroborates my observation that the cases in which a food (usually a protein food from a short list) is the primary modulator and removing it completely resolves full-body eczema as well as fluctuations from various triggers, represents the smallest percentage of cases from these main modulators. (Let me repeat that none of these factors occurs in isolation, the food modulation relates to the state of the gut barrier, which can also relate to detergent ingestion and unhealthy balance of microflora.)

Although my perspective and problem-solving heuristic are novel, there are researchers who have been publishing along similar lines and whose work supports these contentions. The most notable is probably respected dermatologist Dr. Michael Cork in the UK, who has for many years had success when his patients remove all surfactants entirely. He does not make the distinction between soaps and detergents as I do — he writes about not using “soap” because of presumed consequences to the skin, but then goes on to underscore it by saying many “soaps” have detergents in them anyway. [5] I wasn’t aware of his work while we were problem-solving, but I think he has been publishing along the lines of surfactants playing a role in the eczema epidemic for years prior.

So our views are very similar. The main difference and a significant limitation of the no-surfactant approach is that it’s not really very acceptable to most people to refrain from getting clean — Dr. Cork’s assistant said this to me, the trouble is getting people to do it — and in my experience as well as my understanding of the problem, it’s not really necessary to refrain from washing. In fact, many of my site users (including doctors using the site) have commented on how healthy their skin remains even when they engage in frequent hand washing.

The main difference stems from perspectives on how skin is affected by washing. From empirical observation, I have come to see dryness and other impacts from washing as resulting from the residues of highly hydrophilic compounds ON the skin, because of the molecular properties of those residues and how ubiquitous those exposures are in modern environments, rather than the stripping of lipids from the skin by washing, which is the traditional view.

In fact, avoiding the use of traditional soaps with molecular properties that do not cause the kind of increased permeability that most modern syndets do, actually makes it more difficult to get results in typical modern environments. Where most people with uncomplicated histories can see results in as little as a few days to a week with my site strategies, and those with more complicated histories on the order of a few weeks to a few months, these no-surfactant-at-all approaches seem to take on the order of 6 months to 2 years, and the outcomes seem less satisfactory.

In relation to the abnormal influence of modern syndets, in my observation, everyone experiences a change in circumstances because of this environmental influence — degraded skin quality, often dryness that most people believe is inherent, otherwise increased susceptibility to allergic symptoms or amplified symptoms where an allergy already exists, exacerbated asthma — even though not everyone experiences eczema. Anyone under the age of 5 and over the age of 50 especially benefits from minimizing this influence just in skin quality. I believe virtually anyone has the capacity to express eczema under the right conditions, though. Certainly, worldwide eczema and atopy rates continue to rise, seemingly without bound. And in Sweden, which has some of the highest rates, researchers have noted the environmental factor seems related to something in the indoor environment. [6]

In any given situation, removing detergents, or changing another threshold factor (mainly environmental mold or certain protein foods, including via gut barrier health), or both, might bring a given person’s circumstances below the threshold of any potential for triggering the reaction.  If a person’s outbreaks could have resulted because of more than one factor, but that person removed only one of them and stopped reacting because of bringing a threshold up, that person would blame the eczema on that one thing, when they might as easily have achieved the same result, at least in the short-term, by removing the other factor.

I have had the experience with the site that some people will work very hard in their daily lives to remove triggers that cause outbreaks with each exposure — a pet, for example — only to find that when they follow the site strategies and go detergent-free, they can bring the pet back without the same breakouts or other allergic symptoms. (This is simpler with a dog; many cat litters have significant amounts of detergent in them or are otherwise highly hydrophilic compounds, but with the right awareness and choices, that influence too can be avoided.)

 

To be Continued in Part 4:

“To the question of estimating what percentage of the eczema/atopy problem relates to detergents … implies a broad understanding of the problem across the population …”

 

[1] Pelucchi, Claudio, Liliane Chatenoud, Federica Turati, Carlotta Galeone, Lorenzo Moja, Jean-François Bach, and Carlo La Vecchia. “Probiotics Supplementation During Pregnancy or Infancy for the Prevention of Atopic Dermatitis.” Epidemiology 23.3 (2012): 402-14.

[2] Rao, R. K., and G. Samak. “Protection and Restitution of Gut Barrier by Probiotics: Nutritional and Clinical Implications.” Current nutrition and food science 9.2 (2013): 99–107. Print.

[3] Anderson, P. Chris, and James G. Dinulos. “Atopic Dermatitis and Alternative Management Strategies.” Current Opinion in Pediatrics 21.1 (2009): 131-38. Web.

[4]  Brazelton, T. Berry, and Joshua D. Sparrow. Touchpoints: Birth to 3. Cambridge, MA: Da Capo, 2006. Print.

[5] still ISO this paper, I have the print somewhere… It’s an older paper than I am finding easily on Pubmed

[6] Aberg, N., B. Hesselmar, B. Aberg, and B. Eriksson. “Increase of Asthma, Allergic Rhinitis and Eczema in Swedish Schoolchildren between 1979 and 1991.” Clinical Experimental Allergy 25.9 (1995): 815-19. Print.

 

 

This work by A.J. Lumsdaine is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License

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