Morphea (?) on scalp causing hair loss and severe rash; travelling down face.

[EvieL]

I've had what originally looked like a slight indentation on the left side of my forehead since I can remember. In my mid-30s, it became active, causing the skin to thin out, and spread to my scalp. The thinness of the skin caused hair loss. I went through the "grand rounds" with the Yale dermatology students, who collectively shrugged their shoulders and said "I dunno".

This was 13 years ago, and since then, the "morphea" has virtually deteriorated the fatty tissue under my scalp on the left side in a 2" wide strip from the hairline to the crown on my head. This, plus generalized hair thinning, has prompted me to use a hair piece that looks great, but I believe is causing a worsening of the condition. The hair "system" is affixed to the head with surgical glue (thus the totally "real" look). It doesn't bother the healthy areas of my scalp, but the glue, and I think the anaerobic condition under the hair piece, causes irritation, itching, scaling, peeling, and increased smoothing of the skin to the "bad skin" area. It looks like a burn scar - very red and thin and shiny.

The problem I have with this is that I MUST wear some kind of hair piece, but the skin disorder  is worsening because of it. So my first question is - has anyone else had this kind of complication and what have you done about it? I live in Connecticut. Are there any medical experts on this kind of thing that you've found?

While the morphea is wreaking havoc on my scalp, it is also traveling down my face. It has caused a droopiness to my left eyelid, and thinned out my left eyebrow. Now it's moving down my nose, which at this point just looks like red blotches. It's a slow but steady path and I'm jsut waiting for it to reach my mouth. Won't that look great?

I've read how morphea "burns itself out", but this seems more active than ever. I'm also not even sure if this is morphea, since it isn't the standard "knife groove" thing that marks this ailment. I'm scared to death that it's really scleroderma, because I'm noticing other symptoms that previously I considered unrelated. They include Raynaud's syndrome, joint stiffness and achiness, puffiness and weakness in my hands, unexplainable neck and jaw stiffness, tightness in my throat and sometimes trouble swallowing.

I'm also wondering if I have two conditions - one a scalp condition, and one a systemic condition. I practically devoured Merk's Medical Manual and now, of course, think I have every connective tissue and skin disease know to humanity. But the docs I've been to don't have much to offer. Can any of you shed some light on any of this? I am most grateful. EvieL.

[Alan Rockoff, MD]

Your description fits that of morphea.   Morphea is localized scleroderma.  It is a very unpleasant condtion with significant cosmetic consequences.  It is NOT scleroderma.  It does NOT become scleroderma.  If you are worried about connective tissue disease, you should consult with physicians.  The dermatologists at UYale or at UConnin Farmington whould be more than adequate.  I assume the Yael dermatologists are the ones who told you it was morphea in the first place, even if the medical students were, as usual, clueless.

Hairpieces do not aggravate morphea.  The symptoms of "irritation, itching, scaling, peeling, and increased smoothing of the skin" may be those of contact dermatitis, or allergy to the glue.  You may therefore want to look into either another way of attaching the piece, or getting allergy testing.  I agree that you should wear a hairpiece, and I'm confident you'll be able to.  

Either way, I think you really ought to consult a dermatologist about this condition, rather than try to dope out what's going on by reading the Merck Manual.  The medical conference you attended years ago shouldn't be the end of the story.

Best.

Dr. Rockoff

[Jenn1827]

A related discussion, Can morphea scleroderma come back was started.

[knytt4]

for years i been to sereval doctor,about my back and everone tell me that there nothing wrong with me. my back have little spots on it.the spots are white like white head.I us tell there my sexual partener all the time about it.now some of the same spots on my back is on her face.these bumps is on my back,chest head.it took years for it to travel to where it its at now.now i see the same path on my freind.please help me

[EvieL]

Dear Doc:

I can't thank you enough for the information. What a relief to know that this is not and cannot become scleroderma and to know that I probably can continue wearing my hair piece. Since I posted my question, I've made appointments with a dermatologist and my GP regarding the rashes and the aches and pains, respectively. If the skin doc doesn't have answers, I will definitely go to CONN Medical Center.

With respect to the morphea moving down my face, I have an outstanding cosmetologist, a great plastic surgeon, and I'm willing to bet that the three of us can keep me looking good.
Once again, thank you. YOu provide a wonderful service!

EvieL