Guest Blog Entry from one of CBSN’s Peer Support Parents Sandi Walmsley.

Trichotillomania, from a Mom’s perspective

I first found out about trich through an alopecia support group that I’m part of.  I’ve had all forms of alopecia from areata (round spots) to universals (entire body, including face).

As I was blogging one night about my experience with alopecia I noticed my daughter’s eyelashes — they were very sparse, pretty much gone — “Does she have alopecia too?” I wondered.  I took her to the doctor and they confirmed at that time that the thinning on the back of her head was too symmetrical to be anything other than alopecia.  She had a 1.5 inch band of missing hair at the nape of her neck, which looked like it might extend up towards her temple area on both sides of her head.  This would be similar to one of my stages of alopecia — ophasis (http://en.wikipedia.org/wiki/Ophiasis).

All this right in time for the first day of school, she was 9 years old. She was aware of the hairloss and she didn’t seem to be too concerned.  I’m happy to say that was a couple of years ago now and she’s still not concerned about her hair.  I like to think that I did a great job of telling her that it doesn’t matter what other people think of you (what you look like), it what’s you think about yourself that matters.  I’ve always said that, “hair is just an accessory in life” and to “Rock your inner self, hair or no hair!”A few months after I wrote my initial blog about my daughter having alopecia (possibly), I then went on to write the following:…When I say that things happen for a reason, I honestly believe it.  I then began to wonder, “Is this why my hair all fell out in the past…? So I would know all about trich. in the future and know how to deal with the hairloss (both hers and mine) and help her through it? I’m going with that – go along with me…”

In my last post (above) I mention how my daughter has alopecia too…turns out, she most likely has trichotillomania (trich for short) (http://en.wikipedia.org/wiki/Trichotillomania) instead.

My beautiful girl is pulling her hair out by the handfulls – think of the width of a pencil – that’s how much comes out with each tug. We are finding it behind the couch(es) and beside her bedside in the mornings (and her teacher is finding handfuls beside her desk at school). Her pony tail is now up about 2 1/2 inches from the nape of her neck and getting higher with each day.

So it’s been about 3 months since I first noticed my daughter’s hair coming out/thinning. Her pony tail is getting higher and higher. It now begins about 4″ above the nape of her neck and about 2″ above her ears on both sides. Dr. said it is probably good that she wears a pony tail and a hair band every day or she’d probably be pulling from the top of her head too. Right now if she wears her hair down you can’t really tell that there’s hair missing. I think trich is so interesting…the pulling and hair loss don’t seem to bother her at all. In fact, she knows she’s pulling and she knows how little hair she has left (I showed her in the mirror the other night), yet when we are in the drug store she continues to ask me if I can get her ‘this hair brush for my birthday’.

My daughter’s trich continues and her hairline continues to get higher and higher. As you can see from these pictures, there is not much left of the back of her hair – it’s strip about 1 inch wide at the back. The top of her hair – if I bunch it together – is about 2.5 inches wide.
Her hair is getting to the point where it’s starting to look awkward. November 2010 – To cut or not to cut, that is the question.

To this day she is a beautiful, strong young woman. Thank you for the opportunity to share our experience.