Eczema Free Forever™ Eczema Free Forever™

Publication and Happy 48-month TSW Anniversary!

On October 6, 2013, Brian stopped using topical steroids for his eczema because they were no longer controlling his flares, and his skin and physical condition were getting worse. After surviving the horrific early years and weathering the subsequent storms and calms on this protracted journey, he celebrates his 4th year being free of topical steroids. And what a great way to celebrate: The JDNA has published a Systematic Review on TSW in Children.

Much thanks to the parents who wrote blogs to share their children’s stories with others, and a huge thank you to Dr. Sharon Jacob of the Dermatitis Academy who believed this information should be available to the public in order to help prevent Topical Steroid Addiction (TSA) and Withdrawal (TSW) in infants and children. CLICK to view article. The JDNA (Journal of the Dermatology Nurses’ Association) has made it available FREE for 30 days. Thank you, JDNA!

Please share this pdf and/or link with pediatricians, dermatologists, friends, family, pharmacists, and others to help prevent TSA/Red Skin Syndrome and TSW.

Whether it be TSW, scleroderma, or other condition, documenting one’s journey via pictures, video, and/or journaling can provide a detailed record and data that cannot be captured in randomized controlled trials or 10-minute clinic visits. You can help others going through experiences similar to yours but also provide valuable qualitative information to researchers and clinicians who are looking for answers, willing to learn, and daring to think outside the (topical steroid) box.

“You made me glad by your deeds O LORD; I sing for joy at the works of your hands.” Psalm 92:4


Beyond the Itch

SolveEczema News and Publication

One of the goals when I started to write a book about SolveEczema.org (still in the works!) was to find a way to bring the ideas into a mainstream medical and scientific forum for discussion and validation, including also writing a scientific paper. After years considering how to publish something so different, I published in a new open source platform called The Winnower, which offers post-publication peer review.

You can view the paper at: https://thewinnower.com/papers/3412-abnormal-ampli-fication-observations-from-applying-the-engineering-method-to-solving-eczema-and-atopic-disease

I know this probably sounds very dry to site users, but for anyone who has asked the question “Why didn’t my doctor give me this information?!” (too many to count have emailed me the same question), you may be interested in the scientific validation of this work, because it will mean other children will be spared the same suffering.  Although many doctors have used and referred SolveEczema.org to patients over the years, it will be tough to reach everyone or work on solving related health conditions without the validation of peer review.

I’m having some computer problems lately, so rather than trying to compose a post to explain, here are some edited excerpts from recent letters I wrote:
SolveEczema.org represents the novel application of modern technical problem solving, in particular, the engineering method, to solving a medical condition, eczema and related allergy. The engineering method has been described as “The use of heuristics to cause the best change in a poorly understood situation within the available resources.” (BV Koen, The Bent of Tau Beta Pi, 1985)

When an environmental cause underlies a medical condition, complex environmental and exposure differences can translate to seemingly intractable person-to-person variability. This work involves the unraveling of this seeming complexity by using heuristics that allow individuals to focus on controlling what’s important to problem solve in their own circumstances. The paper presents a number of insights that came about as part of the problem solving process and subsequent research, such as why a key aspect of the solution has been overlooked to date and why a new approach is needed for the validation of heuristic solutions.

A letter to a doctor who expressed an interest in a collaboration:
The article mentions how this perspective could reconcile seemingly contradictory hygiene hypothesis research. For example, for awhile, researchers said owning dogs and cats was protective, then they said it was just dogs, etc. The issue the research didn’t take into account was developments in cleaning equipment (e.g. better, filtered vacs, and more frequent cleaning of pet hair), and the fact that cats use cat litter which is just loaded with detergents that they track through homes. Birth order – anyone with a first child with allergies is going to make changes in the home environment and products, which are bound to be preventive for the later children, also never taken into account. Breastfeeding and allergies, too – the studies used to show a protective effect, then later studies said no.  I think both are probably right (the later studies looked at older children, where detergents were by then probably a more significant influence).

And (same person):

You are spot on about related health issues. I think ultimately this issue is as major an environmental problem as smoking was, in some ways worse because other creatures in the environment are affected. (I think it’s highly likely that frogs, bats, and honeybees, possibly even otters, may be experiencing serious unrecognized harm, but that’s another discussion.) Asthma, allergies, dry skin, and even wrinkles are major related issues. I have been surprised at how much the changes markedly decreased the propensity for sunburn (which could have a major impact downstream on skin cancer). Over the years, I have been thanked on several occasions by doctors specifically over the issue of having good skin despite constant handwashing – perhaps that’s something we could collaborate over. The physician handwashing issue touches on many health problems: hospital-borne infection, possible improving willingness to wash hands over using sanitizers (which is probably healthier for providers who don’t absorb so much through their skin, and reducing infections since washing is better than sanitizers), maintaining a better barrier on providers’ hands to reduce the harboring of microbes, possibly reducing the general need for antimicrobial chemicals in handwashes in some settings if mechanical means are less damaging (reducing development of resistant strains), etc.

I have been thinking a lot lately about whether it would be possible to design a case-control study. Unfortunately, the barrier is that the engineering method relies on heuristics – when an environmental cause underlies a disease, unless it is very simple to remove the cause, there is no way to apply a completely controlled treatment or course of anything. To solve the problem in every individual case, it’s necessary for people to use a heuristic tool to apply the solution in the best way for their individual environmental exposures, health status, genetic profile, etc. Then the concern is how well each person uses the heuristic tool versus how well the tool works for them. Additionally, with the engineering method, it wouldn’t make sense to apply the tool exactly the same for everyone, then judge what percentage were helped – the whole point of it is that if one case isn’t solved 100%, the unresolved case doesn’t become data, it becomes a resource to revise the heuristic tool to encompass new information to achieve the same standard of outcome or solution for that person and everyone.

That isn’t a problem-solving approach currently in use in medicine, and it clashes with normal epidemiological methods. The method itself would have to be the subject of peer review, in the context of a solution like this being peer reviewed. Just yesterday I heard an oncologist (The Death of Cancer) speak on the radio about how “regulations” were keeping him from solving problems for individual cancer patients. The ideal he described, what he really wanted to do, was really the engineering method. I think some doctors are using heuristics in other areas of medicine because they get better outcomes for their patients, and the lack of overt discussion of heuristics is, IMO, causing some of the bigger medical controversies of our time. Finding a way to ethically, with all the right safeguards, incorporate the engineering method into medicine, I believe could result in many currently unsolved disease problems being solved. No new scientific or medical breakthroughs are needed, just problem solving we already know how to do in other technical arenas.

Validating the site work – peer review is a start – would prove eczema and atopy are solvable problems, on an individual and general disease problem level.  That sounds simple, yet it’s an earth-shattering idea.  Believe it or not, the biggest challenge here is overcoming the idea, the really hard-ingrained prejudice, that a major, complex, seemingly intractable medical problem could even possibly be solved.

So, yes, finding a route to peer-review and publication has been challenging (ironically more challenging than solving my child’s severe eczema and helping thousands around the world do the same over the past >10 years).  You can view the paper at: https://thewinnower.com/papers/3412-abnormal-ampli-fication-observations-from-applying-the-engineering-method-to-solving-eczema-and-atopic-disease

 

 

Solve Eczema’s Blog