all posts, eczema hacks, miscellaneous

sleep training and skin drying, a midwinter’s tale

cat sleeping
Photo by Fabricio Trujillo on Pexels.com

The little one is beginning to have a routine emerge. So far she fights all forms of sleep training and instead functions on a growing stable sets of principles.

  • Bedtime is 9pm.
  • Midnight to 2am is the start range for the late-night meal.
  • 5am-6am is the start range for the early morning meal, but a second attempt at sleeping afterwards will be successful.
  • 6am-8:30am is the relaxed independent wake-up time range where self play is initiated until boredom or some confined position occurs and it’s time to wake up mom.

At the moment, I don’t really mind this schedule, save for experiencing the skin drying out feeling each time I wake up. The apartment has central heating, which equates to forced air from ceiling vents, which feels great but does tend to dry me out especially as I’m up three times each “night” period. I have a moisturizer by my bed (which I’m starting to think every non-moisturizer withdrawing person should do) so every time I get back in it I reapply to all my problem spots (feet and hands primarily, but also knees and elbows).

It’s annoying because we’ve officially hit that time of year where there’s a consistent wetness in the air outside, and temperatures vary from 40 to 14 Fahrenheit. As a result, my skin gets damp and itchy, I’m constantly bundling up to stay warm, and I can’t keep moisturize on my skin to save my life.

But back to Fiona. Last night she fell asleep at 7pm instead of 9pm (which was a feat in itself and aided by the fact that she hadn’t napped since the morning). What was the result? Feedings at 9pm and 3am, and we’ll see where the terminal night feed lands, but I’d guess it will be around 5am now.

I think it’s fascinating that she has her own internal clock developing. She has never been a great sleeper but she is slowly adding hours in like with a late morning nap she eventually takes that lasts from 2 to 3.5 hours. At first I was really frazzled that she didn’t do what all the books and sites say, which was to settle down around 6pm and be asleep by 6:30/7pm consistently, but then I realized it wasn’t helping either of us that I was getting stressed out when no amount of routining could successfully have her asleep before 8pm each night. She also got so inconsolable with our few day stints of attempts to sleep train her, and it would carry on into the next day. When I finally stopped trying to get her on the “normal” schedule, she got happier, so I got happier, so she slept longer, so I slept longer, and my skin started to heal more- winter dryness and all.

That had been a hugely frustrating part of this new baby life. There are so many external pressures to have a baby that conforms to the general standards that society has deemed the norm, that when yours doesn’t, it can be so mentally taxing.

For example, so many of the pediatricians I saw told me Fiona was too small, therefore not eating enough. The newest pediatrician pulled up the growth curve and showed that Fiona was tracking perfectly for a baby in the 5 percentile (aka she is growing consistently, but is a small baby as far as “norms” go). But instead of understanding that for the first 6 or so months, I lived in fear that I wasn’t feeding her enough, but also knowing that I was on the most hypoallergenic diet I could be (no dairy, soy, gluten, eggs, rice, oats, corn) and that breastfeeding reduced her risk of getting eczema. It was a vicious mental gymnastic I had to contend with, with every comment about how small she was, or every assumption that when she cried that she was hungry, really sucker punching me in the gut. It amped my stress levels up so much and so it is little wonder I had stagnant skin healing for months (on top of fluctuations in my amounts of sleep).

But now, though some of the old thoughts still rear their ugly heads, I have found more peace with the situation, especially as I see Fiona make developmental milestones. And subsequently new calmness is helping my lizard skin slowly regain its shine, even if this north east winter is trying its darnest to dry me out.

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all posts, eczema hacks, the eczema body, women's health

will my baby have eczema?

smiling baby lying on white mat
Photo by Victoria Borodinova on Pexels.com

A while back I wrote a post about what it’s like to have eczema and be pregnant, followed by another post after my little one was born all about living life with eczema and a baby. But today’s topic isn’t about the mom, but rather, about the baby and the baby’s risk of inheriting eczema from his/her parents.

The inspiration for this post comes from the eczema community on instagram. Many ladies have been asking about this topic, so I figured I would try to search for an answer. I apologize if it isn’t the clearest of posts. It’s a culmination of a bunch of witching hour moments over a few days, when Fiona decided that midnight, 1am, 2am, 3am, etc are equally important times to wake up each day.

Most of us know that there is a genetic component to eczema but what does that actually mean? There are a few different ideas being studied about where genes come into play with this condition that are lumped under the “outside-inside model” which look at skin barrier dysfunction (as opposed to the “inside-outside model”, which is about the gut health). Some examples of the outside-inside model, which I’ll go over individually, include:

  • FLG (a gene, that makes the protein filaggrin). I mentioned this protein in an older post, talking about how there were treatments for eczema being developed that made use of it. The gist was that a loss-of-function in the specific gene results in less filaggrin being made, and filaggrin is an essential player in keeping the skin barrier intact.
  • Tmem79/Matt (colloquially known the Matted mutant gene, so named because in mice it results in their fur having a matted look). Researchers found that mice that had this mutant MATT gene also had skin barrier issues and dermatitis issues, and that humans had a similar gene, with a common single nucleotide polymorphisms (or SNP). When there is a misstep (or a mistake) in humans’ SNP, there are significant atopic dermatitis associations.
  • Th2 (a cytokine, or a protein that impacts cell signaling). Th stands for T helper cells, and they help with host defense, but also impact inflammation. Some, like Th2 are know for being (pro)inflammatory, while Th1 is known to be anti-inflammatory. I mentioned this a little when talking about pregnancy and eczema. Research from 2015 showed there are many different Th types, that all may have their own impact on inflammation.
  • interleukin-1 (a protein from a family of inflammatory and regulatory cytokines). Many studies are still showing that breastfeeding reduces your child’s risk of eczema, because of some components (interleukin-beta specifically) in the breast milk that the child consumes. One such study went so far as to say that breastfeeding halves the risk for children between 0 and 3 years of age (and no you don’t have to breastfeed for 3 years for that to be the case!). The way interleukins work is that they are released when there is bacteria or immunological disturbances. The interleukins show up and affect cells like capillary endothelial ones, making them release chemicals and attract monocytes (large white blood cells that help kill bacteria). The problem with these is that certain types can be associated with Th2 (like IL-22 which is made by Th-22), or they can be known to be associated with inflammatory diseases like IL-17.

Then there has been a lot of research investigating if and how probiotics can help prevent eczema for babies too (even Gerber makes probiotic-included products now). In particular, Lactobacillus rhamnosus was seen to have mixed results, with some studies showing it reduced genetic susceptibility to eczema (meaning it somehow calms the baby’s risk of having eczema) for children with thirty-three eczema susceptibility SNPs. On the flip side, other studies said Lactobacillus rhamnosus had no effect on reducing the child’s risk of eczema.

To be honest, I am still a bit skeptical of the studies done that show no effect because, from what I can tell, they have the parents give the babies probiotics for say 6 months, and then continue to see if there is a benefit at some later date like 2 years of age. If a modern western diet (high carb, especially in refined sugars) can alter an adult’s gut microbiome fairly rapidly, why would the probiotics a baby takes at 6 months still be helping the gut at 2 years (the biome diversity would have changed due to diet by then, and the gut must stay healthy for it to help the skin)? Wouldn’t one expect the gut microbiome diversity to change and said “good” gut bacteria to not be able to survive the environment anymore?

So essentially I am still thinking, as the studies show no negative effects of taking probiotics, after talking with your baby’s pediatrician of course, what would be the harm in giving your baby probiotics? That and making sure to keep your baby on a diet that creates a gut environment more conducive to good bacteria flourishing.

Also note, I wasn’t able to access the whole study so I’m not sure how the probiotics were administered unfortunately. On a tangent, that’s always a frustrating point to me. I don’t think studies should cost the public to access because we should want to encourage people furthering their health in any way possible. I understand scientists need go make money too but I do wish there was another way besides charging subscriptions to databases of research. 

But I digress. So what is the takeaway for all those future mamas worrying about passing eczema on to their children? Do they have cause for concern? Perhaps. The way I see it (noting I could be interpreting this incorrectly) is for:

  • filaggrin: If the loss of function filaggrin gene is passed on, the child would probably have an increased risk.
  • Th2: the Th1/Th2 dominance seems to be more dependent on estrogen than genetics (though I could be wrong) so my guess would be that having a girl would make her more susceptible in that case (again I definitely could be wrong).
  • MATT gene: The atopic dermatitis shows up is because of that misstep (mistake) in the common SNP of the gene. As a result I think the answer is yes, it probably is a risk for one’s children, because missteps (I believe) would be passed down since they are mutations.
  • interleukins: I believe the pro-inflammatory ones that are problematic are a product more so of consistent stressors on the body (both from invaders like bacteria, and from literal stress). If the baby/child is relatively healthy and isn’t too stressed out, in tandem maybe with the mom breastfeeding her baby (so long as she is able to, aka isn’t on chemotherapy or radiation or something), then I do think the risk of eczema from this perspective, is decreased.

But the real question now is how do all these components balance out in an individual, in a baby? Does having a loss of function filaggrin gene guarantee a lifetime of eczema? Or does it just make you more susceptible but you are fine if you don’t have the MATT gene’s SNP misstep (or one of the other 33 SNPs mentioned that are related to eczema susceptibility)? It would be interesting to see a study done that investigates all these components together, so we could know which are still present when you have people with severe eczema, topical steroid withdrawal systems, etc. As for the initial question, sure, there are genetic components that you pass down to your baby, but it seems like not all the heavy hitters are genetic so your baby may still be fine.

One more thing to leave you with: the American Academy of Dermatology made a post a while back saying a few ways to reduce your baby’s chance of eczema (minus genetics naturally), which included:

  • having a dog at home before the child’s 1st birthday
  • moisturizing a newborn’s skin
  • not eliminating a bunch of things in your diet
  • eating a health diet while pregnant, and
  • breastfeeding (and having a healthy diet during it too)

All in all, know this: if you do have a baby and he/she has eczema, the research body is growing in the field and more understanding of what causes eczema are coming to light, which means better ways to treat it will follow.

REFERENCES

Bauer SM. Atopic Eczema: Genetic Associations and Potential Links to Development Exposures. International Journal of Toxicology. 2017 Mar 30: 36(3): 187-198.

Cabana MD, McKean M, Caughey AB, Fong L, Lynch S, Wong A, Leong R, Boushey HA, Hilton JF. Early Probiotic Supplementation for Eczema and Asthma Prevention: A Randomized Controlled Trial. Pediatrics. 2017 Sep; 140(3).

“Can anything prevent my child from getting eczema?” America Academy of Dermatology, https://www.aad.org/public/diseases/eczema/prevent-my-child-from-getting-eczema. Accessed 9 Jan 2019.

Hofmann A, Kiecker F, Zuberbier T. A systematic review of the role of interleukin-17 and the interleukin-20 family in inflammatory allergic skin diseases. Current Opinion in Allergy and Clinical Immunology. 2016 Oct; 16(5): 451-457.

“Interleukin 1.” R&D Systems 1999, https://www.rndsystems.com/resources/articles/interleukin-1. Accessed 18 Dec 2018.

Jepsen AA, Chawes BL, Carson CG, Schoos A-MM, Thysen AH, Waage J, Brix S, Bisgaard H. High breast milk IL-beta level is associated with reduced risk of childhood eczema. Clinical & Experimental Allergy. 2016 Jun 2; 46(10): 1344-1354.

McLean WHI. Filaggrin failure – from ichthyosis vulgaris to atopic eczema and beyond. Britist Journal of Dermatology. 2016 Sept 26; 175(52): 4-7.

Morgan AR, Han DY, Wickens K, Barthow C, Mitchell EA, Stanley TV, Dekker J, Crane J, Ferguson LR. Differential modification of genetic susceptibility to childhood eczema by two probiotics. 2014 Aug 21; 44(10): 1255-1265.

Raphael I, Nalawade S, Eagar TN, Forsthuber TG. T cell subsets and their signature cytokines in autoimmune and inflammatory diseases. Cytokine. 2015 July; 74(1): 5-17.

Saunders SP, Goh CSM, Brown SJ, Palmer CNA, Porter RM, Cole C, Campbell LE, Gierlinski M, Barton GJ, Schneider G, Balmain A, Prescott AR, Weidinger S, Baurecht H, Kabesch M, Gieger C, Lee Y, Tavendale R, Mukhopadhyay S, Turner SW, Madhok VB, Sullivan FM, Relton C, Burn J, Meggitt S, Smith CH, Allen MA, Barker JNWN, Reynolds NJ, Cordell HJ, Irvine AD, McLean WHI, Sandilands A, Fallon PG. Tmem79/Matt is the matted mouse gene and is a predisposing gene for atopic dermatitis in huma subjects. J Allergy Clin Immunol. 2013 Nov; 132 (5): 1121-1129.

all posts, eczema hacks, miscellaneous, treatments, women's health

policy and innovation around skin

blur brainstorming business close up
Photo by Pixabay on Pexels.com

A long while back I came across this article called From IUDS to IVT – Designing for Women’s Health on medium a while back, by Emilie Lasseron. In a nutshell, she talks about the new innovations in women’s health and how it is important for creators in this realm to be mindful of their audience. Naturally I tried to pattern match this to blend into the eczema realm as well, to combine my two interests/where I’m at in life now.

Lasseron’s big 5 bullet points were to “design:

for passive engagement”, which was where she explained how we have a culture where we don’t really think about fertility until we start trying. This is similar to what we see with eczema (with eczema being a negative thing that people don’t try but experience). People don’t really think much about it, until it starts to take over and disrupt their way of life.

for myths, not just the facts”, in which she explained that we have to meet people where they are at, even if that means from a perspective that may be incorrect or grounded in myths. This is huge for eczema. From dispelling the idea that we have contracted some contagion, to explaining that no, coconut will not cure the skin, there are so many “old wives’ tales” and other myths to slog through that when talking to someone new to having eczema, it’s important to be able to calmly and concisely explain the basics and why some of the commonly heard remedies may be wholly ineffective.

for the conversation women want to have with their doctor”, in which she described creating tools to help women feel comfortable getting their questions out to doctors and to help them reclaim their agency. Which is also CRUCIAL with eczema. Patients with eczema are already feeling terrible about their skin. And so it is so important that they can feel able to openly talk with their dermatologist and not feel judged or scrutinized for their choices, where they are coming from in their educational journey, etc.

with as few assumptions as possible”, in which she talks about not assuming women know everything about their bodies (most of us don’t), and uses the example of a period tracker app that expected you to know your cycle length before you could sign-up (I never personally know how long my cycle is). This is like if there is an app made for eczema and it keeps requiring the patient to know exactly when the flare started, what we ate that day, how long we slept, did we encounter any new allergens, etc. It is hard to track all of these little life factors, especially if we didn’t think we were going to flare, or we are new to having to deal with severe eczema.

with side effects in mind”, in which she talks about making products that allow women to talk about/understand other side effects, an example being an app that tells you you may be more constipated during the luteal phase of your period. This would be the equivalent of an app that gets you to talk about various symptoms and co-morbidities of eczema like the oozing or the flaking or the infections, the isolation or depression, etc, so that it would be easier to identify:

  • one, what stage of a flare the person is in, and
  • two, what is most common, and therefore important to address (like increasing rates of depression).

All in all it was a fairly quick read and highlighted a lot of the innovation that is and needs to continue to happen within women’s health (and could be extrapolated to what innovation needs to happen in the eczema world too) to allow for better healthcare and treatment.

Speaking of innovation, I entirely missed hearing about this event: Make The Breast Pump Not Suck, a hackathon that happened in Boston April 27th-29th last year. It was hosted to try to address not just pump technology itself, but policies around maternity leave, breastfeeding spaces at workplaces, what barriers to breastfeeding exist, how to build community engagement, and getting stories from different women about their experiences. There were also community innovators mentioned who are doing awesome things in the field of women’s and maternity health (see here), including one in Boston called the Neighborhood Birth Clinic! The group is trying to open a free standing birth clinic in Dorchester. The event also highlighted different independent innovators like Melissa Hanna who created Mahmee, a secure platform that lets providers coordinate healthcare of both the prenatal and postpartum stages.

My dream is that there will be hackathons and the like for innovations with eczema too, besides just the Eczema Expo. And hey, if not, maybe that’s what I’ll work to pioneer one day.

all posts, eczema hacks, treatments

moisturizer withdrawal for eczema

person pouring plastic tube bottle
Photo by Moose Photos on Pexels.com

Moisturizer withdrawal (MW) is a hotly controversial topic in the field of eczema (especially in regards to topical steroid withdrawal). The medical community generally is anti-MW, while there are some specific doctors and communities that are very much for it.

Some of the pros I’ve read about on giving up moisturizer include:

  • moisturizers seal in heat, which makes going through eczema/topical steroid withdrawal more uncomfortable
  • your skin produces cortisol naturally, but adding moisturizer can suppress this production (more on that in a bit)
  • you are losing so much skin (more in reference to TSW) that you don’t want to try to lubricate the dead skin and slow your body’s attempt to rid itself of the old tissue
  • most moisturizers have something in them (usually to help them be more shelf stable) that does not help the natural skin biome. As such, they may hinder healing because more resilient skin bacteria, ones that can survive the pH and chemical changes created by said moisturizers, are usually not the benign ones

I then proceeded to go down a rabbit hole in studies trying to understand more about the skin and its own ability to create cortisol (again this was more in reference to trying to understand how to overcome TSW more easily/quickly). The rabbit hole led me to read about keratinocytes and how our skin reacts to stressors.

Keratinocytes (a type of outer skin cell) can create cortisol in response to adrenocorticotropic hormone (ACTH), as studied in cultured keratinocytes (meaning keratinocytes on petri dishes or other lab-made mediums) and in human skin samples. Keratinocytes also make glucocorticoids (GCs) which are known to block wound healing, but also block pro-inflammatory cytokines (something we know run rampant in those going through topical steroid withdrawal). So, it’s my thinking that the GCs could help as a balancing factor with the excessive inflammation that comes with eczema and TSW. The amount of cortisol produced also changes in response to things like trauma and UV light and dryness. It was the dryness that intrigued me because with conditions like topical steroid withdrawal, we are taught to combat it by applying more moisturizers to prevent dryness, but what if that is decreased the skin’s ability to hit a homeostatic level and kick up its cortisol production?

In Japan, there is a doctor (Dr. Kenji Sato) known for his treatment of eczema and topical steroid withdrawal, and he works in a hospital (Hannan Chuo Hospital) on a program where people enter specifically for TSW and then they stay for an average of 40 days or so and then leave, supposedly healed. Note, they are healed from TSW, but they can still have eczema flares, though those usually aren’t as bad. I’ve been curious about his treatments for a while, especially because the regime doesn’t require strict diets, and the main things it requires are keeping your nails really short, exercising everyday, and not using any moisturizers (no soap, no lotions or creams or ointments, and any showers must be shorter than 1 minute). For those interested in the hospital, there were two comics I came across a while back that tell stories of what it was like to be a patient at this hospital. The first is done on the artist’s personal experience, and the second was created after an interview with a fellow patient.

Personally, I am starting to think moisturizer withdrawal may be the way to go (for myself). I’ve noticed that I itch horribly after baths and sometimes showers, and itch even worse when I put on my lotion or creams on wet skin (which is usually the recommendation of the medical community to help seal in the moisture). To be fair, I do tend to take baths/showers that are too hot by those same medical recommendations, but water tends to cause me pain at any level of exposure so I think I enjoy hot water because it’s a different pain sensation so it blocks out the burning of open wounds.

After thinking about it, as it is currently winter in Massachusetts, this would be a terrible time to go through moisturizer withdrawal. My skin tends to fissure something horribly when it’s dry and especially in winter/when indoors with the heat on. I will think about going through MW in the spring/summer and post about a 40 day trial then.

 

REFERENCES

Cirillo N, Prime SS. Keratinocytes synthesize and activate cortisol. J Cell Biochem. 20011 Jun; 112(6): 1499-1505.

Zhu G, Janjetovic Z, Slominski A. On the role of environmental humidity on cortisol production by epidermal keratinocytes. Exp Dermal. 2014 Jan; 23 (1): 15-17.

Vukelic S, Stojadinovic O, Pastar I, Rabach M, Krzyzanowska A, Lebrun E, Davis SC, Resnik S, Brem H, Tomic-Canic M. Cortisol Synthesis in Epidermis is Induced by IL-1 and Tissue Injury. J Biol Chem. 2011 Mar 25; 286(12): 10265-10275.

all posts, eczema hacks, treatments

“how doctors think” about eczema

assorted doctors tools
Photo by rawpixel.com on Pexels.com

A few weeks ago I finished a book called How Doctors Think by Jerome Groopman and oh boy do I have thoughts. First off I have to say that the book had its fair share of  downer moments because it had a lot of cases of patients with cancer who struggled with doctors to find plans of care that extend their life just a bit more.

But other than that it was full of all kinds of information about different schools of thought that doctors employ to help their patients. Two specific ones it mentioned included the evidence-based and algorithm-based approaches.

With the evidence-based approach, the doctor relies on existing research, especially those that have a large amount of studies behind them. The issue with this approach is that doctors often default to using said heavily-backed solutions without inquiring or considering less numerously-backed ideas. This could become a problem, say if a new drug has tens of studies done on it, all sponsored and paid for by the company that produces the drug, while an alternative medicine or treatment may have great results but only a handful of studies supporting it, In that scenario, it’s almost more of a research field monopoly,  rather that robust results that gives the drug the good reputation, causing the doctors to favorite it more. In relation to eczema, where these ideas can be applied is in understanding how to approach doctors in a way that doesn’t cause them to default to automatically prescribe topical steroids (the long standing, most heavily-researched atopic dermatitis prescription option) as the first line of action.

With the algorithm-style approach, the doctor can follow a flowchart style of logic that’s been proven relatively effective over time. Its basically like having a graph that has arrows from each option to a few subsequent options, like:

“Does the patient have X cluster of symptoms?

  • Yes = Prescribe drug A.
  • No = Run test 1.

Is test 1 positive?

  • Yes = Give drug B.
  • No = Run test 2.”

And so on, and so forth. The flaw with this approach is that it doesn’t allow the doctor to think outside the box, which Groopman argues can result in said doctor trying to fit a patient nicely into an existing “flowchart” result, even if there are some signs or symptoms that don’t quite match up with that diagnosis. This may be the case when someone has other co-morbidities too or when someone has common symptoms of two very different diseases (like this example of a woman who was using topical steroids and found out she had lymphoma). For this problem it can be useful to ask the doctor what are the best and worst case scenarios of diseases that fit the presentation of symptoms. Asking this can help a doctor think beyond their initial conclusion and more thoroughly work to rule-out other options.

Another significant point the author makes is that for doctors to really become better, they must remember their mistakes and use that vulnerability to inform their care. He gives examples of renowned doctors who literally have binderfuls of their mistakes that they reference to maintain humbleness and act as a forcing function to always push themselves to improve. This might be a more difficult conversation to have with your doctor as I imagine no doctor enjoys being asked, “so let’s talk about all the times you royally effed up with patients”.

One last subject the book addresses that I’ll bring up is the pressure doctors implicitly face when they accept any form of samples or gifts from big pharma companies. It’s not that all pharma-marketed medicines are bad, but that you want your doctors’ reasons for choosing a specific product to come from no other influence than that they believe it works and have seen that said products have good efficacy. This is why it can be hard to decide whether or not to use samples a doctor gives you as you don’t know that they really think it works or if they just happen to have them around from a sales pitch. A question to ask in this case might be “have you seen a lot of positive outcomes from use of X product?” Another way to foray into this territory with a doctor is to ask about long-term results, as well as what are any known side effects (this could apply to eczema-related products like topical steroids to non-steroidal creams or biologics or brand-name moisturizers). If something sounds too good to be true, it’s probably fairly new to the market and so the longevity of effects haven’t been tested. A further question to ask is if there are any cheaper off-brand equivalents because those usually only come out after something has been on the market for a while.

These are just a few of the points that the book made, that I’ve tried to connect back to how to talk with your dermatologist about eczema. There are more factors involved that could make the process more convoluted or impossible in some instances, but I do think these provide a light foundation to attempt to build a stronger relationship with the right doctor.

Speaking of the right doctor, I have an older post that goes more into making sure you feel comfortable and that you have a good rapport with your doctor, which was another huge point Groopman made in the book. He explained that a patient who is difficult to treat, simply by having complex issues that don’t respond to more common treatments, often ends up being resented by the doctors, and as a result gets worser care. The suggestions in the book for overcoming these kinds of doctor-patient relationship issues is to say something like, “I know my condition is difficult” or “I feel like we got off to the wrong start” to help try to make the doctor aware of their negative emotional bias.

On the flip side, a patient that the doctor likes too much may also get worse care if the doctor makes overly sympathetic emotion-based decisions like skipping tests to not inconvenience the patient or by avoiding procedures that may cause the patient pain, etc. To overcome this issue, it can be as simple as saying “please treat me like you would a patient you knew nothing about”, and hopefully that should provoke the doctor into making sure they’re as analytical and diagnostic as possible again.

I’d love to hear about any particular experiences you’ve had with your dermatologists in the comments, and whether or not you agree with my suggestions, and also from any doctors out there reading this.

all posts, eczema hacks

“have you tried…?” survival guide

Yesterday was my 27th birthday. Yes, I know it’s not my eleventy-first birthday or anything, but I am going to impart my own bit of wisdom from my meager years of life. Also from November 1st through New Years is Tolkien season for Jake and I, so expect a lot of references.

In these 27 years I have often heard the question “have you tried…?” in regards to moisturizers and supplements and all manner of things that one might think could help me with my eczema. While all good-intended, I think there needs to be a narrowing of the question so that it is focused, and therefore more easily answered.

What I mean by that is, when someone asks, for example: “hey, I noticed your skin; have you tried using coconut oil on it?”, a potential answer on my (or any eczema-living human’s) end could be “have I used coconut oil for what purpose?”

That first clarification requires the questioner to expound upon their thoughts. Are they asking because my skin is dry? Because it’s red? Because it’s itchy? Because they think they have an idea to balance out my skin microbiome and kill potential S. aureus overgrowths? It lets the question receiver have a context to delve into to make the initial question into a conversation.

One misconception about eczema is that it’s just dry skin. If it was just dry skin, yes, using virtually any (nonalcohol-based) product probably would help alleviate the problem. However, eczema is more than its visible crocodilian facsimile. It is an autoimmune disorder, meaning there’s a underlying cause for the external appearance, and so though you can help the condition by addressing the skin issues, the idea of there being a blanket  solution in the form of a single moisturizer ends up feeling a bit naive and potentially frustrating.

So a gentler way to education about the various aspects of living with eczema is to require the questioner to be more concise. If they are thinking “oh your skin is so dry… you should try (insert moisturizer here) to help” then we can get somewhere because we can be like “yes that may help the dryness but I also suffer from other symptoms of eczema like skin sensitivity, and so I can’t use (insert moisturizer here) because my skin reacts poorly to (insert an ingredient)” or answers of that nature.

If someone asks if you’ve tried a product because of your skin’s redness/inflammation, you can respond in kind with “no, I haven’t. How does this product reduce inflammation?” and learn something new. Or you might have the opportunity to respond with “no, I haven’t tried it but I’m working on reducing inflammation via diet right now, eliminating sugar and whatnot and reducing stress”.

In a nutshell, if we can get the questioner to be more precise with why they are recommending the moisturizer (or whatever product type) for, then we have a chance to have a deeper conversation about what we’ve tried and our logic for why we tried it, and also increase everyone’s health literacy, including our own. And you know me and my love of increasing health literacy. 

So speaking of health literacy, here’s a list of common eczema symptoms that can be inserted into the question receiver’s responses to help figure out what the questioner is trying to address:

  • dry skin
  • flaky skin/peeling
  • redness (rashes)
  • inflammation
  • skin heating/flushing
  • itch (of course)
  • fissures/skin cracking
  • wrinkles
  • bumps/acne (often due to scratching)
  • excessive palmar lines (a fortune-teller’s nightmare) indicating a lack of filaggrin protein
  • sores
  • weeping (usually from the open sores)
  • insomnia
  • infection risk (again from scratching, but also just from having a compromised skin barrier)

And with that short post out of my head, I’m now off to enjoy my birthday week (as I spent the actual birthday day driving in the car 8ish hours to visit my parents).

Catch me off blasting my parent’s retro speakers and dancing around the house like:

And/or probably heading out to enjoy yet another of the Harry Potter world movies, Fantastic Beasts: The Crimes of Grindelwald. Can I just say how much I love that they come out around my birthday time, and have been since I was in second grade?

I’ll be the one sitting in the theater all giddy like:

all posts, community, eczema hacks

how to live your fullest life with eczema

woman stands on mountain over field under cloudy sky at sunrise
Photo by Victor Freitas on Pexels.com

Two days ago I was working on a post where I mentioned a book I was reading (The Little Book of Skin Care: Korean Beauty Secrets for Healthy, Glowing Skin by Charlotte Cho) and how it explained that Koreans have a different mentality about their skin. Their attitude is that skin care regiments are to be enjoyed, rather than thought of as a chore. My thoughts were that it would be amazing if there was a way to cultivate such an attitude into the lives of those with eczema, to get us to see managing our skin not as a burden, but as something we could learn to embrace and therefore lovingly treat ourselves during our routines. My hope is that the better the attitude we can have about the inevitable (having to put in a lot of time to manage our skin), the better we can mentally feel about living with eczema. Speaking of living with eczema…

I watched a webinar from the National Eczema Association that same night called Unhide Eczema: Storytelling for Healing. It features 3 speakers, including Ashley Lora, Alexis Smith, and Mercedes Matz who each went into detail about their experiences with eczema and how they found community through opening up about their individual journeys living with eczema.

The major takeaways from the webinar were:

  • show the world your skin. Don’t hide away and fear the general public’s response but rather embrace your skin and “unhide eczema”,
  • change how you talk about yourself and eczema. Don’t say you are suffering from eczema, but rather say you are living with it. The power of words is remarkable, and having an empowered attitude or at least one of acceptance is so important, especially as it is a part of you. So change the way you talk and change the way you think about yourself and eczema, and
  • speaking of empowering, empower yourself and others by sharing your story. You’d be surprised by how many people have eczema and need to know they aren’t alone.  The power of telling your story might even help you heal!

The idea of empowering oneself when you have eczema and sharing your stories brought me back to an article I had recently stumbled upon about a woman who cured her eczema through faith. Specifically, it was this woman’s power of belief that drew me. I think it can be so hard to find a way to keep believing you will heal when you’re stuck in the midst of a bad flare, and that is when it becomes essential to find your voice and talk about what you’re going through. Whether this is sharing a story about being miraculously cured, or of just finding a product that made you feel just a tad better, the ability to speak up and open up abour your experience is such a powerful tool. For one you are giving yourself a voice, regardless if it’s driven by frustration or elation.

You’re also you’re giving yourself a chance to build community (which I’m sure by now you know I’m obsessed with, but for good reason). Community is so important in this day and age because not only can you pass down the wisdom of the products you’ve tried, but you can continue to reinforce that you are not alone. I can’t state the value of this enough.

Just imagine you are in a public place (let’s say a movie theater) and you start to scratch an itch on your neck and you are feeling self conscious because you didn’t cover up your eczema with clothing layers today, but instead of sinking into your seat or averting your eyes, when you notice the person sitting next to you watching you scratch, you speaking speak up (before the lights have dimmed and the previews have started of course). And said person is like, “Wait, you have eczema too?! Omg have you tried x? And did you hear about the meet-up to visit the new eczema clothing company? Free samples! Oh and have you joined the eczema walking and group? Heard about the fair? Tried the eczema yoga morning classes?” And then someone else overhears your conversation and they chip in, and then another, and then before you know it you’ve made all these new connections and been inspired by all these new ideas on how to augment your own care and all it took was not worrying about hiding your flared-up neck, and being willing to chat. On a side note, apparently the NEA’s annual Eczema Expo is a lot like that dialogue interaction (I hope I can go this year!!).

My point is you have to be brave and take a chance. If nothing else comes of it, at least you are increasing awareness, and that alone helps trickle into better attention by the powers that be, which can lead to policies changes, shape doctors’ standard protocols, cause businesses to make new product lines, etc. Plus you spoke up and expressed yourself, which is huge. It is so important to not feel like you have to hide the part of you that is as impactful and long acting as eczema.

I’m totally with the #unhideeczema movement because it can be so damaging to have to modify everyday life habits to take care of your skin that the last thing you want to do is hide away, not to help heal, but because you feel ashamed. There is no reason to be ashamed. Over 31 million people in the U.S. alone have eczema. You are not alone.

And so that is why I think it’s so important to take these chances, speak up, show some skin! Because this is your life, and yeah you may be living with eczema, but don’t let that stop you from living!

And here’s a recent picture of me living it up with Fi in our comfy autumnal pajama apparel.

2018-10-19 11.19.26.jpg

One last thing, if you don’t know where to start telling your story, get some ideas from the National Eczema Association. The organization goes into more detail about the mental benefits of writing your story in a recent post here.