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Jan L.: Linear scleroderma and Vitiligo

I did not realize until recently how fortunate I was to have such a mild case.

I was fourteen when we noticed an indentation on my forehead, just below my hairline on the right. I had a history of eczema, so I already had a dermatologist. He diagnosed it as linear scleroderma (LS), and also discovered it in my mouth, on the right side of my upper gums.

We looked at orthodontic photos taken when I was ten, and it was starting then, although of course we had not noticed it. It was probably about this same time that I started developing vitiligo on the right side of my chest and down my right arm and hand.

The dermatologist was not concerned with my LS, although he showed me off at a conference in which a lot of doctors came in and said, "Ah! En coup de sabre !" One of them told me I should not worry, I looked great with it. I did not realize until recently how fortunate I was to have such a mild case.

The LS progressed over the next few years, down my forehead to my eyebrow and my lip on the right side is a bit drawn up; it also runs under my chin (it is probably technically morphea). The gum tissue in my mouth in an area on the top right side is thick and fibrous, and the gums have retracted over two teeth. One of those two teeth has become very sensitive, and interestingly, it is dying, but from the inside out and root canal will not help. I wonder about that, and if the disease has begun to progress again.

It seemed to go into remission when I was about twenty. I was not ever overly concerned with my looks, so I really did not pay that much attention to it. I did get great questions occasionally about the "scar" on my forehead. Often I made up a sad story about a progressive deadly disease. Now that I know more about LS, there's some irony there.

I am forty-three now, and except for a deep wrinkle between my eyebrows and an asymmetrical mouth, I look pretty normal.

The vitiligo has been progressing, although it is still only on my right side, the arm/chest/shoulder area. This summer it is pretty widespread on my chest.

One thing that made me think about a few days ago as I was talking to my gynecologist about interstitial cystitis, which I was diagnosed with several months ago, is that this is another of those weird, unknown-etiology (cause) diseases in which your body attacks itself (in my case, the protective lining of my bladder). He asked if I had other chronic, autoimmune-type disorders. I told him I was pretty allergic, but I did not think of LS.

It would be interesting to know if anyone else has had related disorders in association with LS. And what is the link between vitiligo and LS?

I know I am fortunate to have a mild case. I do worry a little about one of my children developing it, or vitiligo; but I guess we will wait and see.

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ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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