Monday, 23 April 2018

Update: all the changes and tweaks and ongoing therapy is working itself out! I'm not "cured" or anything but it is a helluva lot better than a few months ago when I had to hide under scarves and cry from the pain...

Right now this is what it looks like:


Not too shabby! Of course the pink bumps are never going to be completely gone (or never say never? *hopeful*) but this is so much better than the red rash and open weeping sores I had this winter.

SO! What is my line-up of therapy and goods to bring my DWD under control? I'm so glad you asked:

-no cow dairy
-the least amount of sugar
-lots of water
*I do drink coffee, tea, and drink cider and wine but always in moderation/occasionally

-50 mg Pine Bark Extract pill
-Vitamin B (either B2 100 mg or a B100 complex) pill
-15 mg zinc pill
-100 mg magnesium (doctor said it will help with my headaches)
-lavender pillow mist + frankincense/lavender oil mix on pulse points (great for anxiety and to sleep)
-meditation 5 mins (needing to get this up to 10 in 6 months)
-Vitamin A 10000 IU pill (at night)
-Vitamin A cream (on affected area at night)
-SPF 15 or higher (depending on season and outdoor activity but ALWAYS at least 15)

-Vitamin D (on cloudy/stay inside days)
-CBD pills for anxiety; situational
-Germolene for spot treatment (when the pink bumps become redder)

So there ya go! That's what I'm doing, remember to talk to your dermo and/or doctor or health care professional when trying new things - and on that note what is working for you?

I haven't had to use Germolene in over a week! And I am glad of it, this stuff is potent and shouldn't be used daily.

I am drinking soy milk instead of any other dairy alternative so I can try and keep my hormone levels up too, at least that's the idea - I don't know if it's helping at all but tofu and soy milk are a part of my diet since I left birth control for an IUD.

I hope this helps you on your journey to wellness!


  1. Andrea,
    I really appreciate your blog. I have been dealing with this disorder for 55 years now. It is very frustrating when Doctors are excited to show you off but have no clue as to what really works. I will never soak in bleach, but aside from that I would try almost anything. I am really bad with sticking to a nutritious diet. I will try the vitamin supplements you suggested. What do you do about your nails?

    1. I will do a blog about my nails as I have been hearing from the FB group that our nails are craptastic. Mine are thin and get hangnails all the time, and my toes are sometimes out of a horror flick. But thankfully for the most part because of the supplements and all the fish/Omega I get in my diet I think it helps. Anything that helps hair and nails be thicker seems to be a good idea for us because its all about rejuvenation that we seemingly can't produce.
      Thanks for reading Rebecca! And ya, I have never soaked in bleach - that sounds like a nightmare to me.

  2. So glad to have your insight. What is the fb page under I can't find it.

    1. It's here!

  3. Thank you for your suggestions I can't wait to try them...Jeanne

  4. Thank you for this blog. This is the only one I've been able to find pertaining to Dariers. Mine is getting out of control and the meds the doc put me on make me they don't work. I have shown your list of remedies to my dermatologist...who honestly I think is clueless about the disease. I'll try what has worked for you and see how it goes.

    1. I hope some of it is helping! You might want to join the Facebook Group that is very active and has more suggestions and people looking for how to manage this disorder - pooling resources and ideas:

  5. Guess I'm the oldest one here. I'm 66 and have had the wonderful disease for 63 years. I was the guinea pig for Accutane and numerous other so called cures. Anything from mutton tallow, 750,000 units of water soluable vitamin A. The only oatmeal diet for a month-I never want to see another bowl of oatmeal as long as I live. That's all I had to eat-no sugar on it-nothing. I've been lasered, dermabrasioned, Sea weed wraps and yes, the bleach baths(just cuts down on bacteria on the skin. Sent to Scotland for the pure water, the tiny fish who nibble off dry skin. My dermatologist lets me write my own prescriptions-whatever I think just might work. So a broad spectrum antibiotic and Tacrolamus ointment to keep the scabs from forming. Ah, the fingernails-biotin tablets help and the solution they dress horse hooves with a cosmetic company makes it for humans now- Barrielle. shampoo is a cheap dandruff shampoo called Magic Whisper-loaded with zinc. If you really have an itchy scalp Ketoconazole Shampoo-it is very strong and is prescription. I've been rattling on far too long. The list of things I've tried is far tooooo long. Good luck and I'm glad something is working for you.

    1. Thanks Charlene, and I am sorry you too have to deal with this awful disorder and for so long! Magic Whisper sounds like it truly is magical, I'll have to look into it. If you haven't tried the Facebook Group it is very active and a great community you might like:

    2. Thanks Adrianna! Too bad for you too. I'm not on facebook. A funny thing happened when I was. I'm an artist(portraits...) Someone asked me if I could work from a photo. "Sure". So this guy sent me a picture of his erect penis. I said in a post, "I'm sorry, I don't do miniatures." He got a bit ticked because all of my friends were laughing. He took revenge and spammed me with porn. I left. I can look at the site because my husband is on Facebook,; but, no more for me! Yeah, I know I have a sarcastic, quick wit. Magic Whisper is available at of all places the Dollar
      Stores and Target uses their own label for it-Target brand dandruff shampoo.

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