Many individuals affected with ichthyosis have found their own remedies that work well to manage their skin.  FIRST is sharing those remedies here for all to try.

ARCI-CIE

Denise G., affected adult

Face Oil:

2 tbsp jojoba oil  
1 tbsp rose hip seed oil 
1/4 tsp vitamin E 
2 drops Frankincense essential oil
2 drops Myrrh essential oil
2 drops Patchouli essential oil
3 drops Lavender essential oil

ARCI-lamellar

Jennifer B. for her daughter, Ana.

1 cheap blender that you don’t mind gunking up
1 - 14 oz. (396g) tub of Aquaphor
3 – 7 oz. (210 ml) containers
1/3 c (40g) olive oil
1/3 c (40g) glycerin
1/3 c (40g) coconut oil
1/3 c (40g) safflower oil
1/3 c (40g) grapeseed oil
1/3 c (40g) purified water
Essential oils as desired for scenting (I like orange, but lavender is also nice)

Sterilize all equipment and containers with boiling water before starting. Add ingredients to blender, then blend until the consistency of mayonnaise. Ta-da! You’ve just made lotion.

Michelle G. for her granddaughter, Natalie

Butter balm recipe
1/2 cup  shea butter, I like raw organic
1/2 cup coco butter
4 tblsp extra virgin olive oil
1 tblsp castor oil

Melt your solid oils and add liquid oils and several drops lavender  oil
I pour mine in wide mouth jelly canning jars, easy to dip into. It can take awhile to set up, I put mine in the fridge sometimes

We use Lanolin on my granddaughter's body and my homemade butter for her scalp,. Don't waste butter when done moisturizing, I wipe it on my leg, its wonderful stuff. Also, to get the oil/lanolin out of the sleepers, I use Biz laundry booster. I sprinkle it liberally on 2 sleepers in my bathroom sink and hand wash really well before putting in with the laundry, the oil pulls right out.

An FYI I learned a good trick, I keep my left hand free of lanolin or oils, that way I don't get my grand dtrs clothing oiled on the outside, it really helps.

X-linked ichthyosis

Barbara P. for her son

Eucerin - 454g
Glaxal Base - 450g
Glycerine - 30mL (1/2 a bottle)
Urea Crystals - 125g (dissolved in about 1/4 cup boiling water) - I would order it through a pharmacy in quantities of 500g so I would have it for several batches.

ITCH REMEDY

Denise G., affected adult

When my itch gets out of control, I base some of my treatment methods on a natural and holistic approach to physical and mental health known as Ayurvedic ...and I want to share these methods which have helped me. I have CIE and live in a hot humid climate and these treatments calmed my inflammation, got rid of my itch in two days, and even reduced redness.

1.  Add coconut milk (one to two cans) to a bath. It is antimicrobial!
Pour it over your skin for a real treat. It is good in hair too.

2.  Make a calming skin mask beblending oats into a fine powder and adding honey.  Thin with plain Greek yogurt. Spread the mixture all over your body. I let it stay on until it dries, then shower off.

3.  In place of lotion or cream, try ghee. This is clarified butter--an ancient super oil -- works very well for me in place of Vaseline. Add some essential oil to mask the smell. Ghee is loaded with key vitamins and fats, and absorbs quickly. I use it from face to foot. Massage the body toward the heart (up legs and arms, down from shoulders) for better lymphatic drainage.

I am in love with all three. Give them a shot if you are looking for something soothing and deeply moisturizing.  I wish I had these tricks when I lived up north for cold winters!

This information is provided as a service to patients and parents of patients who have ichthyosis.  It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents.  Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.