Darier's White Disorder and wearing COVID-19 face masks

I have been seeing some people talk about how they hate that their new mask wearing routine is making their DWD freak out! I have been having a good reaction to Kiehls Ultra Face Cream and SoonJung creams (as mentioned in a previous blog). It feels nice, no burn, and has really helped create a barrier to the friction of the mask.

Here is more on them:

https://www.etudehouse.com/int/en/index.php/collections/soonjung.html


https://www.kiehls.ca/en/skincare/category/moisturizers/ultra-facial-cream-622.html



And from that time I talked about Black African Soap: http://fightagainstdariersdisease.blogspot.com/2020/02/trying-african-black-soap.html

And that time I talked about trying Korean Beauty Products: http://fightagainstdariersdisease.blogspot.com/2020/01/while-in-korea-beauty-and-skin-products.html

Trying African Black Soap: For acne and Darier's White Disorder

Fun fact: going off pill form birth control and onto a dipped IUD has changed the way my body deals with my hormones and that means my DWD has changed over the past few years, but recently it has changed AGAIN - but it's not exactly the Darier's that's upsetting... it's ACNE?! 

I'm too old for this crap!

I asked my dermatologist what a raw, red, crusted (sounds like DWD!) but with white heads was all about and she confirmed my suspicion: that's not a break out that's acne. GREAT.

So I leaned into some postings in the Darier's White Facebook Group about African Black Soap, this is the one I found and used:

From Mama's Life Product's website:

What it does

Helps remove scars, suitable for all skin types, assists in removing makeup, delays aging of skin, and removes extra oil from skin, excellent for razor bumps and in-grown hairs. Rich in Vitamins A, E & Iron, Revered for having skin nourishing benefits due to an abundance of antioxidants.

How to use it

You can use the Black Soap for showering, bathing, washing your hands, hair and face. Take the Black Soap apart and knead it into a ball to make sure there aren’t any jagged edges, and rub between hands to work into lather.

Key Ingredients & Benefits

100% Unrefined Raw Shea Butter: Shea Butter can be used to treat all of the following skin conditions: Dry Skin, Eczema, Infant Eczema, Stretch Mark Prevention & Minimization, Psoriasis, Arthritis & Rheumatism, Wrinkle Prevention, Diaper Rash, Muscle Fatigue, Scar Minimization & Skin Discolorations, Dry Hair & Scalp and as a natural shaving agent. Shea Butter has been used for centuries for its amazing abilities to renew, repair, and protect the skin. Shea Butter helps to alleviate eczema, soothes sunburn, minimizes stretch marks, long lasting moisturizer, rich in vitamin E, A, and F.

Roasted Plantain Skin: Helps to remove foreign objects and particles from the body. Relieves sunburn, Helps to heal from insect bite, Aids in quicker healing of wounds, Lowers chance of scarring, Treats acne and Rosacea.

Cocoa Pod: Antioxidants, Helps reduce stretch marks, Hydrates skin deeply, Sensitive skin healer.

Coconut Oil: Vitamin E, Assist In Anti-Aging, Rich In Protein, Tissue Repair, Excellent Moisturize For Dry And Hard Skin, Excellent Exfoliant.

Palm Oil: Contains vitamin E, Great anti aging product, Helps skin fight free radicals that damage skin, Deep cleansing, Helps in prevention of skin inflammation.

---

Ingredient List: Roasted Plantain skin, cocoa pod, palm kernel oil, coconut oil, palm oil, Shea butter.

Scent: Unscented

I'm in! So I tried it for a week and I am HOOKED:

It definitely helped my raw irritated facial skin; it dried it out without making it sore and itchy. I found that doing it before bed with the Vitamin A cream worked best (in the morning I used my sensitive astringent and a moisturizer **it could be that it's winter here or just the fact that I'm using soap for the first time in ever on my face like this but my skin is thirsty for a good moisturizer. So far I'm making do with the leftovers from Korea but I will need a replacement soon! Something heavy but not oily or perfumed.... I also still did my used coffee grounds as a scrub 2x this week, and avoided the chin area/went over it lightly as it hurt so much.

No makeup in my pictures, and they were taken after washing my face with the soap. The lights are so bright that you don't really get to see how red and raw it was. 

I am going to keep this for a while and I think once my Aveeno sensitive skin wash runs out I may switch to this as an all around body wash too (though I will have to secure a good body lotion as it is drying) any suggestions on what you use for body lotion and facial moisturizer is welcome! Leave me a comment to tell me what works for you! 

While in Korea... Beauty and Skin Products from abroad

SO I recently went on a trip to South Korea and I experienced their OBSESSION with skin care. For those that live in Ontario you will understand when I say: take all the Starbucks and Tim Hortons and change those into makeup and beauty stores = that's Seoul, South Korea. They were EVERYWHERE. My travel partner and I pretty much went into every one of them (she was fascinated with their products and became a little obsessive herself!)

Now people around me know I have a skin disorder so she knew I wouldn't have as much fun playing potions class in every Etude House we came across. But I was willing to try things that were for sensitive skin... and a face mask or two because they just looked lovely! I tried a tea tree oil mask and I have to say it was GREAT! Take a look:

It was super hydrating and cooling and I never had a breakout or irritated skin after. I liked them so much I got a second pack of them to take home. Roberta, my travel buddy and makeup Yoda, recommends doing them every week (or every other week if that sounds too much to someone like me!)

I have also been trying their SoonJung line and so far after a week no bad reactions and no irritation.

I also picked up one of these (well not this exact one, I bought mine for about $3 in a Daiso in Seoul...) 

And it's a great way to not use pad products/something reusable and better for the environment PLUS it just uses warm water to take off your makeup. For me, less is better with my skin, so to just use water or a tiny bit of light soap like Neutrogena Naturals is great. I highly recommend adding this to your arsenal!

I will repost on more of the products I'm using from Korea, but so far I like how light and non-irritating they are. The makeup all include SPF too which is a necessity with me being a ginger (and the DWD). The ones I am looking forward to are: Baking Powder cleanser, more sheet masks, and this Face Blur.

Having DWD means I deal with a lot more redness and spot treatment than most, and sometimes all the products can be overwhelming so I often just... don't do anything. But it's fun to play with makeup again and build confidence around looking "pretty". It's not an everyday thing for me but having healthy skin should be - I am looking forward to learning how to clean and hydrate my skin in a helpful way as I age with DWD.

UPDATE JAN 23 2020 - I have been back for almost two weeks and I LOVE that face pad, it has become a daily ritual and so great. The SoonJung line has been nice but not exactly an improvement, but still nicely hydrating and not irritating me. The Baking Powder foam cleanser stung the first time I tried it so I steered clear of it since. The sheet masks are still my #1 favourite from this trip!

Winter Flare Ups: Living with Darier's White Disorder in all seasons

Each winter I am reminded why I hate the cold weather: it's dry here in Ontario and I run my humidifier constantly, but it is never enough. My scalp gets flaky and my skin gets flares easier. But this year a NEW thing has happened :( my face is getting dry red patches that itch and have a mix of acne and flare up bumps = NOT FUN.

dry patches are new and I hate them

I am trying to treat it with a mixture of things as I am finding one cream is either too heavy (Vitamin E cream and a new one I tried from LUSH called Celestial) and takes away the redness/dry spot but leaves pimples, or it dries out the pimples and soothes the dry skin but leaves flaky dry skin (Vitamin A cream, Polysporin, and the Germolene).

UPDATE: Celestial didn't work out, it was too heavy and left me breaking out** I ended up using it as a hand cream.

I hate winter.
(And yet I prefer it to summer? Ugh, scratch that, I just hate my stupid skin.)

Granted I'm also highly stressed lately and have been consuming more sugar than normal... I need to focus on getting back into a routine of meditation and low/no sugar intake as my back has sprouted red "wings" and the front of my torso is sporting red blotches here and there. I am feeling very defeated.

I have been going to the gym somewhat regularly so sweating and friction of the workout clothes might also be contributing, and they have a hot tub there which is chlorinated so that could be helping or hindering me as well; I have heard that chlorine helps some of us with DWD and people go swimming in pools to help keep flares down.

I am going to go back to 2x 100 mg magnesium a day - one in the morning and one before bed to see if that helps, on top of my regular Vitamin B + Pine Bark Extract mix in the morning. It could be time to mix in Vitamin D (cloudy winters are not making this fun either).

So just a reminder that it's not always the same thing day in and out that works - sometimes you have to bang your head against the metaphoric wall and try to tap into what's making the flare and fix it on the fly.

Happy winter everyone :/

Magnesium as treatment: An article and some thoughts

Image source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6134490/


Posted in the Darier's White Disorder group on Facebook was an article from a naturopathic doctor, and then a comment from someone who has used Magnesium orally to help combat the symptoms of Hailey Hailey disease which is similar but different to Darier's White Disorder. Here have a look: https://en.wikipedia.org/wiki/Hailey%E2%80%93Hailey_disease


Here's the article👉: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6134490/ 

What I found interesting: "therapeutic regime of oral magnesium (300 mg/day)... In June 2017, a trial of oral magnesium chloride 300 mg per day was started. Within 1 month, significant improvement was seen in lesions" 

I take 100 mg/day as recommended by my family doctor - I'm starting to increase my dose (but slowly as there is a laxative side effect to consider! From 100 mg to 200 mg a day (one pill in the morning and one before bed. What a happy accident to have the Magnesium prescribed to me for my headaches, meanwhile its been possibly helping my skin disorder!

Here's what someone said in the group as a comment and I found really helpful: 

"I have been intimately involved with this protocol for people with closely related Hailey Hailey disease since the original Borghi case study in 2014. At this point, several thousand people with HHD follow this protocol, most with considerable success.

It does not stop outbreaks, but it does limit their frequency, size and greatly speeds healing.

Several things have been found through testing to be important that were not uncovered in the original case study.

The first is that the dose of magnesium that appears to work best is 6 mg/kg of body weight when you have an active outbreak reduced to 4.5 mg/kg when there is no outbreak to maintain the protective effect.

Dosing based on weight rather than the standard approach which is based on age and sex is much more effective. Although based on weight, the dosing is roughly equivalent to 100% of the Recommended Daily Intake for magnesium at the full 6 mg/kg dose.

The other difference that was found to be important compared with the original case study is that this works best when you maintain vitamin D in a range of 40-60 ng/ml (100-150 nmol/L). To maintain the higher end of this range requires a daily dose of vitamin D of roughly 7,000 IU/day. While this range and dosing is considerably higher than that recommended by the national standards organizations, it is perfectly safe as long as you have normal kidney function. Although 4,000 IU/day is the official Upper Safety Limit, the same standards body set 10,000 IU/day as the No Observed Adverse Effect Level (NOAEL). Another way of looking at the safety of this dosing is that the body will produce between 20,000-30,000 IU of vitamin D from sun exposure.

A number of people have added Vitamin C to this regime although there are no studies, formal or informal showing that this makes a difference in Hailey Hailey.

The original case study was based on the use of magnesium chloride, but there has been extensive informal testing of other forms of magnesium and all with the exception of magnesium oxide and hydroxide seem to work equally well.

Some people are very sensitive to the laxative effects of magnesium, but there are several simple steps that minimize them. The first is to switch to an amino acid chelate of magnesium such as lysinate, glycinate and so on. The second is to split the dose in two and take half in the morning, half at night. It also helps to drink an extra glass of water when you take the magnesium effectively lowering the concentration and thereby laxative effect.

Happy to help anyone interested in adopting this regime. Given the success for Hailey Hailey, there is every reason to think it will be useful for Darier's"

Are you using Magnesium too?

We can't always blame the heat...

I have lived through three natural disasters while on vacation.

1. Hurricane Irma

2. out ran a tornado in Florida

3. I just visited Japan during a heat wave so intense they proclaimed it a natural disaster...

I was really scared for my skin. So I took everything I needed  plus sunscreen (which I use Neutrogena SPF 30 moisturizer and LIFE Brand Sunthera SPF 60 Spray). I even learned from the locals and bought a sun umbrella/parasol, an imabari (or Japanese face towel made for you to wipe the sweat from your face, which was always dripping), and a fan.

at Itsukushima, also known as Miyajima, a small island in Hiroshima Bay
It was in the 40 degree celsius range that day

Throughout the trip I tried to stay hydrated but water sometimes just didn't cut it, so again, learning from the locals, I bought Pocari Sweat to replenish electrolytes. Most of the time I felt like I was on a boat, the horizon always tilting from my heat exhaustion. Many Japanese people would stare at me and I can only wonder if it was just my red hair they were looking at or if their inner monologue was "why would you come here in the summer?!"

I pushed through. It was an amazing trip with highs and lows, but never the lows being in temperature!

But I didn't have a flare up... Sure I had a few red bumps where ever there was friction like on the backs of my knees, under my bra line, and yes even in my groin creases. but never on my neck and back were I usually get my flare ups.

I stuck to my supplements, stayed away from dairy, was on top of hydrating, and used my vitamin A cream each night (stashed in the refrigerator to make it extra calming from the cold!) and used Germolene for spot treatment on the places that had bumps from sweat and friction. Plus having cool showers with no soap, just rinsing at the end of the day was a great way to feel a bit cooler before bed and cleanse my body too.

Case in point:

that sheen is from sweat and sunscreen

Note no flare up in 40 degree heat at Fushimi Inari Taisha

No burn and no flare in Harajuku!

I was going to fight my partner in going to Japan in the summer due to my disorder, but I said no, my disorder doesn't define me - and I'm so glad I did! Granted it was still a crazy idea to go in the heat, but who could have known it would be record breaking and as terrible as it was. 

Still, I'm glad I didn't let my skin dictate what adventures I can go on, and I was pleasantly surprised to see that my fears about the heat and my Darier's was unfounded.

How do you deal with the heat and your Darier's?

Do you have monster nails?

Warning, I don't holdback and talk about how gross my nails can get because of DWD...

I have always had terrible nails. I have never not picked at my nails and throughout my life they look like raw meat: red, chapped, falling apart... I rarely have anything that goes past my finger to form a "nail" as in they never grow that far. I always thought it was my anxiety, as a coping method I pick my nails, especially if there is any hangnails and that happens ALL the time.

I recently saw in the Facebook Group that nails get the Darier's White Disorder treatment, meaning they get messed up. Now my thin, brittle, red, chapped fingernails make more sense. And my toes, oh dear, it's like a Victorian monster down there! Frankenstein's toenails! They grow weirdly, like on angles, split, ingrown... it's just, gross. And so my anxiety sets to work and I usually pick them down to the quick/cuticle. I used to paint my fingernails to give them more structure, but working at a historic museum I can't have painted nails as it's not exactly accurate :P But my toenails are ALWAYS painted so they don't look so gross, though it is weird to paint toenails that grow every which way - I usually trim my toenails down as far as I can to avoid splitting and showcasing those weird Franken-Nails. 

I have found that with the supplements I take to combat DWD it does end up helping my nails, (and hair!), as things like omega fats and zinc are good for that. My love of eating fish (hello sushi) helps too. But then I did a google search and found this:

Biotin (a.k.a. vitamin H) can improve hair that is splitting or thinning as well as strengthen weakened nails. Taken with zinc and the corticosteroid clobetasol propionate, biotin has even been used to treat alopecia, an autoimmune skin disease marked by the loss of hair.

Has anyone ever tried using Vitamin H as a supplement? I think I may have to ask my doctor about this! 

I also read somewhere that DWD nails are also susceptible to build up under their non existent nails and I have to say I believe it - I mean look at mine: I barely HAVE nails and I am typing all day so how do I get gross stuff under there?!

These are actually quite healthy for me with little to no splits and hangnails. I guess putting the zinc back in daily really helps. 

Do you have really sore or gross nails too? What do you use to help it?