Last updated January 1, 2013
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Wigs and Other Help

Some people with ichthyosis choose to wear a wig. Their ichthyosis affects their hair (it's very sparse and sometimes brittle and lack-luster), so they wear a wig instead to get "the look" they want.

FIRST

The Foundation for Ichthyosis and Related Skin Types has a resource page on Scalp Scale that is outstanding. 

 

Hair and Scalp Tips

 

When you have ichthyosis, it doesn't stop at your scalp; however, you can't cream your scalp and scrub on it like the rest of your body since it's covered with hair.  Yet it's important to do something that minimizes scaling on the scalp, otherwise it's uncomfortable, it flakes like really bad dandruff, and the scaling can even permanently retard hair growth on the scalp (so the hair doesn't grow at all in certain places, making your hair very fine, and maybe even missing in patches).  So what can you do?

 

Products that Loosen and Reduce Scale

Several companies make shampoos that you either use just like a normal shampoo (scrub it on, and then rinse it right off), or shampoos that you put on your scalp, leave in for a while, and then rinse out.  To increase the effectiveness of the shampoo, you can occlude the scalp; that is, cover it with something plastic.  Shower caps will do; I prefer Saran Wrap.   The elastic on shower caps can be too tight, and besides giving me a headache, they sometimes leave marks on my head.  I use two sheets of Saran Wrap, and then some kind of cloth cap on top to secure it.  I do this once a week, at night, right before I go to bed, and let it "sit" overnight.  I also use body cream rather than shampoo.  A liquid just doesn't have enough "oomph" for the skin on my scalp.  I use my favorite Lactic Acid Cream (see Body Creams) right on my scalp (then occlude it and sleep overnight).  How long you let your head "cook" is a matter of personal, trial-and-error experience (what I'm describing is essentially an unsupervised, mild chemical burn to exfoliate the scalp).  I need to let my scalp sit, creamed up and occluded, for about 7 hours.  Much less time is not enough, and the skin isn't loose enough, and much more time is too much, and I may burn the edges where my scalp meets my face. Hardly an exact science, but over the years, it's what has worked best for me.  Trial-and-error also revealed that once a week is about the right frequency for me to do this.

Once the Scales are Loose...

Whether you've used shampoo or cream, left it on for some time or not, occluded or not, it is up for you to try out and figure out what works best for you.  Regardless of which method you use, though, you need to do something to actively remove the skin.  No scalp product can do it all by itself.  I prefer a flexible, fine-toothed comb.  If you have trouble finding a fine-toothed comb at your drug store or regular place you'd look for combs, try a pet store.  They have combs meant for pet grooming (removing fleas and ticks) that often are ideal for the work we need to do on our scalp.

First, the scalp needs to be very moist.  Since I have cream in mine, I rinse the cream out (just with water--I'm just trying to loosen up the area, and take some of the cream out.  I'm not trying to shampoo it clean yet).  Then, using the fine toothed comb, I can lift small sections of scale right off.  I don't comb them all the way free of my head; I just lift them off my scalp, and leave them along the shaft of the hair.  I worry about getting the scales completely free from my hair later, when I'm shampooing to get the hair completely clean.  I try to go along a logical pattern:  I start in the middle, and part my hair front-to-back.  Then I gently work the comb on both sides of the part, lifting a small section of scale away (sections I'm trying to loosen are maybe 1/2 inch wide by one inch long--sometimes longer if the scale is really loose, but often just this small).  When I've gone completely back-to-front, then I move my part over an inch or two, and go down both sides again.  I do this until I've covered my whole head (usually about 15 minutes).  I clean my comb off with soap, and take it into the shower with me (I've been in front of the mirror, in front of a sink, up until now).   Now is when I shampoo my hair, at least twice, to get all the cream out.  Then I put conditioner on, and pick up my fine toothed comb again.  I feel for any sections of scalp that still have scale on it (and it's softer than ever at this point), and gently use the comb to remove some more.  I also gently comb through all my hair, completely removing as much scale as possible.  Rinse, and it's done.  Dry and style as normal.

How Often Do You Have to Do This?

I usually do this once a week.  I try to do it on the weekend, when I'm not going to work, and I don't have any big social plans, in case I "over cook" my head and you can see slight burn marks on the side.  Sometimes I go 10 days or so, depending on my schedule.   However, by the end of 6 or 7 days, I can really feel the difference.  My head is tight--tight enough that it even noticeably pulls on my eyes.  So the night before, I usually don't want to "do my hair," just because it's a bother and it reminds me that I'm not like everyone else.  But the next morning, when I'm done with it, I am so glad.  I feel so much better.  I've also got my routine down where it takes me about 10 mintues the night before, and about 30 extra minutes the next morning.  So it's really not that bothersome.  It's definitely worth it.

 

Some people who just use shampoo (not cream like I do), use it more frequently.  Again, it's a matter of trial-and-error, whatever works best for you.  Let me know if you do something different that works for you!

What Other People Do:

Sheila wrote:

You may want to ask your dermatologist about a medication called Derma-Smooth, it is a topical steroid oil. You put it on and leave it on overnight with a plastic cap, this will not only help with the flaking and itchiness, it had entirely removed all scales on my 5 yr old who has x-linked ichthyosis. It really works wonders, no drying at all, just the opposite.