Category: Research

lumsdaine_citizen_science_poster_screengrab
A.J. Lumsdaine's poster at Citizen Science Association conference, highlighting need for framework to validate citizen science innovations (c) A.J. Lumsdaine. Used via Creative Commons Attribution License

The Dilemma of the Citizen Scientist

allergyjourney Leave a comment

I believe in using scientific evidence (i.e. available research) to make important health choices. But in my journey with my kids’ eczema, I have also been humbled to understand that for as much as we know, we still don’t know everything. Throughout the telling of our story on this site, I have talked about how the most effective generally accepted treatment offered to us by our physicians (i.e. constant moisturizing coupled with potential lifelong dependence on steroids) temporarily fixed and was better than having broken, painful, itchy skin … but still fell so sorely short of a cure or true solution. Living through this experience with my children expanded my mind and the way in which I go about making health decisions and evaluating available treatment options offered to me.

I used to adopt without question every treatment option proposed by evidence-based medicine. Now, I live in the grey area between believing in evidence and evidence-based medicine, utilizing and implementing generally accepted treatment plans, and engaging in a two-way and patient-centred dialogue with our physicians … WHILE STILL acknowledging that what we do today as “generally accepted treatment” may change tomorrow as our research knowledge gets better. I leave the door open for the near certainty that we do not yet have all the answers, and that true cures — not just today’s pharmacologic or surgical solutions for symptom control — are still possible from exploring at the frontiers of what we know. And finally, I now readily acknowledge that many of today’s generally accepted treatments carry with them side effects that need to be soberly considered and weighed out, especially if the treatments are merely treating a symptom and not preventing or curing the disorder.

The idea that what we do today as “generally accepted treatment”, or even that our understanding of a disorder, may be wrong, and the medical community’s potential to limit progress in their understandable zeal to guard practise within existing evidence-based confines is highlighted well in Dr. Barry Marshall’s story. Dr. Marshall’s experience in elucidating the true cause of stomach ulcers also serves as a sobering reminder that sometimes we must explore at the frontiers of what we know in order to solve medical mysteries — and that not everyone exploring at the frontiers, at the limits of our comfort level, should automatically be written off. (See Dr. Marshall’s brilliant and inspiring story in the Discover Magazine article entitled, “The Dr. Who Drank Infectious Broth, Gave Himself an Ulcer, and Solved a Medical Mystery (The medical elite thought they knew what caused ulcers and stomach cancer. But they were wrong—and did not want to hear the answer that was right.)”.

When I departed from the generally accepted solution of potential lifelong steroid dependence for my children, I departed carefully, thoughtfully, and while staying in close contact with our physicians, and I made environmental changes that are generally regarded as safe (GRAS). Because of the anecdotal evidence that the solution worked, I was convicted that the impact of detergents now ubiquitous in our modern environments and its potentially causative role in eczema (theory presented by A.J. Lumsdaine on solveeczema.org) needs research validation. Unfortunately however, I neither have the resources nor ability to fund or personally complete the research I so desperately think is needed.

This leads me to the biggest dilemma I believe is faced today in health care research: The dilemma of the citizen scientist.

What if some of our most difficult, seemingly intractable, medical problems of today cannot be solved unless the paradigm in which we imagine and create solutions drastically changes? And what if that paradigm shift cannot occur unless individuals who haven’t grown up within the existing research “club” are able to challenge norms, bring new ideas, or otherwise contribute as equal partners? Or what if we are limited from solving these most pressing medical problems of today because even how we conduct research (often a controlled, laboratory setting) is what limits us? For instance, I would argue that medical problems with a significant environmental component or causation are difficult to study and solve within controlled, laboratory settings and may require a different type of data gathering that is more distributed — even crowd-sourced — and lends itself well to the burgeoning field and approach of “citizen science”.

The author of solveeczema.org, A.J. Lumsdaine, presented a poster at the Citizen Science Association’s 2015 Conference getting at the need for mechanisms or frameworks to evaluate and therefore validate innovations from Citizen Science. Without these frameworks, we run the risk of dismissing innovations that are exploring at the frontiers of what we know, and may hold promise for future solutions and cures, or disallowing innovators from participating in research initiatives as equal contributors.

Have a look at Lumsdaine’s poster, entitled, “If you cure cancer in your backyard, who will know? The need for a framework to evaluate and support innovations from citizen science: experience from a website for problem solving eczema”.

Incidentally, my child is one of the children in the before-and-after pictures on the poster which show the dramatic efficacy of Lumsdaine’s problem-solving heuristic and demonstrate strong anecdotal evidence to support her theory about the impact of detergents on eczema. There are a number of other children from literally around the world whose dramatic before-and-after photos on the poster are remarkable.

I welcome any thoughts on how citizen scientists can be co-opted either for idea generation, data gathering, data validation, or their innovative ideas — into the traditional research space. I look forward to innovations in the domain of research itself and the hope of new ways to move towards solving the most intractable, challenging medical problems we have today!

epidemic_rise_in_food_allergy
Epidemic rise in food allergy 1997-2011 Shareable image from kidswithfoodallergies.org, a division of AAFA

Does detergent exposure cause food allergy?

allergyjourney Leave a comment

Both my kids have multiple food allergy and it is a heavy burden having negative impact on quality of life. Like anyone carrying the weight of an affliction, I soon began to ask: how did this happen? How can it be cured? How can it be prevented?

The title of the post may seem intentionally provocative, but it is the plainest and simplest phrasing of a fundamental question I’ve silently asked ever since I was convinced by solveeczema.org that detergents are the primary cause of my kids’ eczema. My younger child, who had much more severe eczema which started earlier in life, and was exposed to harsher and greater amounts of detergents, is allergic to many more food groups than my older child. How did I make the leap to asking whether detergents were somehow causative of my kids’ food allergies? That’s what this post is about.

Eczema Causes Food Allergy?!

There is a wide and growing body of research looking at the relationship between eczema (also known as atopic dermatitis or “AD”) and food allergy (usually abbreviated in the literature as “FA”). The search terms “atopic dermatitis correlation food allergy pubmed” yield a dizzying array of journal articles documenting a number of questions medical researchers have sought to answer about how AD (eczema) is related to FA (food allergy). Certainly, the literature indicates there is a correlation, an association, between AD and FA. But good scientists know that correlation does not necessarily indicate causation — meaning, just because two things occur together does not mean that one necessarily causes the other.

I was excited to discover a group of researchers had very recently sought to specifically answer the question “is there a causal relationship between eczema and food allergy?”, through a systematic review of existing medical literature — 66 papers, to be exact.

The paper is aptly titled Does atopic dermatitis cause food allergy? A systematic review. and drew this jaw-dropping conclusion:

This systematic review confirms a strong and dose-dependent association between AD, food sensitization, and FA. AD of increased severity and chronicity is particularly associated with FA. There is also evidence that AD precedes the development of food sensitization and allergy, in keeping with a causal relationship.

In as plain English as I can muster while still staying true to what the researchers said, this means:

  • “dose-dependent”: the worse the eczema, the higher prevalence of food allergy
  • “severity”: more severe eczema is particularly associated with development of food allergy
  • “chronicity”: more chronic (ongoing, long-term) eczema is particularly associated with development of food allergy
  • “in keeping with a causal relationship”: plainly, eczema appears to cause food allergy

Eczema somehow causes food allergy. This conclusion is HUGE! It isn’t so surprising, though, given the understood immune system mechanisms and how individuals become sensitized to substances (a precursor to developing allergies).

Proposed Mechanism

This news release of the American Academy of Dermatology entitled Dermatologists caution that atopic dermatitis is a strong precursor to food allergies summarizes the proposed mechanism:

Recent research examining the genetic basis of atopic dermatitis has shown that this chronic skin condition is likely related to a defect in the skin’s protective outer layer – known as the epidermal barrier – allowing irritants, microbes and allergens (such as food) to penetrate the skin and cause adverse reactions. Since the skin barrier in patients with atopic dermatitis is compromised and open to absorb proteins, it allows sensitization to certain foods, leading to a positive skin or blood test.

NOTE: It’s important to clarify that my position about people who suffer from eczema or atopic dermatitis is not that they have a inherent defect in their skin, but that they have a genetic predisposition to react to environmental detergents in a way which results in a breakdown of the epidermal barrier severely enough to cause eczema. It’s my belief that it’s not just some people that react to detergents, either, but we’re all affected — on a continuum from dry skin to severe eczematic lesions. These convictions come directly from discussion with AJ Lumsdaine from solveeczema.org about her ideas.

Detergents Cause Skin & Membrane Breakdown

There is a large body of research already showing that detergents damage and destroy skin and membranes. Just a few references here:

In the book Current Technologies to Increase the Transdermal Delivery of Drugs, a section about surfactants/detergents starting on page 30 states:

It is well known that surfactants have effects on the permeability characteristics of several biological membranes, including the skin [67].

and later states that some types of surfactant seem to alter the barrier function of the outer layer of the skin.

A more detailed example, from journal article Surfactants and skin membranes:

When we clean the skin we remove … part of our natural barrier – the stratum corneum. [Skin cells], both singly and in clumps, are released from the skin surface by the action of detergents and mechanical stimulation. So too are the lipids and proteins which make up the [inner region] of the stratum corneum. … Changes in the physical properties of the skin occur after washing. For example, changes in skin surface pH and transepidermal water loss (a sensitive index of barrier function) are easily demonstrable. Excessive exposure to surfactants results in repeated damage to the stratum corneum …

Skin Breakdown from Detergents is A Largely Unrecognized Cause of Eczema

This statement is the crux of the theory proposed by SolveEczema and requires targeted research to prove out. However, it is the experience and conviction of the thousands of families who’ve used that site to solve their child’s eczema. The quotes from papers and textbooks help, but I didn’t need to be convinced that detergents alter the skin barrier and break the skin membrane open to the extent that they actually cause eczema — I saw it on my kids. I saw their skin healed without drugs and moisturizers when I removed detergents, and I saw their skin become red and itchy again when they re-encountered environmental detergents.

Detergents Contribute to Food Allergy Development?

Let me tie my thought process from all of the above together, and present my hypothesis.

1. Detergents damage skin and other membranes, and is a largely unrecognized root cause of eczema, AND
2. Eczema has a causal relationship to development of food allergy.

Drawing it simply (perhaps over-simply!):

Detergents –> Eczema –> Food Allergy

Towards Breaking New Ground in Research on Food Allergy Prevention

From the sum total of my experiences, education and review of the literature, I have a strong conviction that detergents are likely a largely unrecognized but significant causative factor in development of food allergy. This line of inquiry needs directed research to prove out.

I often struggle with the question: What if the researchers were aware of this hypothesis; what if they turned their research towards specifically answering the question “Is the epidemic rise in food allergy correlated to the rise in prevalence of environmental detergents, especially in highly industrialized nations?” (Detergents are more common in industrialized nations, both within homes and institutions for cleaning, and in the environment because of their prevalence in industrial applications. This is a topic for a subsequent post!)

More questions intrigue and haunt me, propelling me into some form of action, starting with laying out my hypothesis here. What if, in posing the hypothesis and carrying out the research, we would be able to answer for the many children and families impacted by food allergy, “Why did this happen?”, and more importantly, “How can we prevent it?”

What if a return to the nearly non-existent rates of food allergy we saw 40 years ago, or wholesale prevention of food allergy, turned out to be something so disarmingly simple, at the very root, as changing what the world uses to clean and wash with?