Kimmbe
  • Female
  • Geneva, IL
  • United States
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Profile Information

Relationship Status:
Married
Do you have alopecia?
Alopecia universalis
Are you age 18 or older?
Yes - I am 18 or older

Started at age 12 in 1985 and progressed rather quickly to Universalis.  I did cortisone pills, shots, Rogaine, and was a "guinea pig" at GWU to try a topical treatment that irritated the skin to point of severe itching to stimulate growth.  That was fun under a scratchy synthetic wig.  Gave up trying as those treatments were a huge fail.  I think the cortisone I took at puberty has permanently affected my hormones and cortisol regulation -- been fighting weight battles ever since.  My experience with hair loss the the "golden 80's" was horrendous -- in school I felt like a pariah until college, where things got a bit better with a "new start" with new students.  I desperately wanted to maintain my looks from before alopecia so I religiously drew on eyebrows and wore false lashes from age 13 and on, along with wigs.  I first wore a scarf at age 31!!!!!!!!!!!  Liberating, although I almost always accompanied it with a hat or large visor.  As I age I find my level of comfort becoming more and more important and I have to thank the strong women who have battled cancer in the last 30  years for making a scarf-clad woman more "normal."  Seriously -- life changing.  I wear a wig as a stay-at-home mom to appear normal -- ha ha, but I take it off as soon as I walk in the door and wear hats and scarves inside and outside doing gardening.  I am slowly not caring what people think, but it's a long road.   I wish this 44-year old woman could talk to 13-year old me and teach her that she is beautiful with hair or without.   I neglected to mention that when I DID first wear a scarf at 31 I was with the man who is now my husband -- through him I gained confidence to be more free and comfortable and for that I am eternally grateful.  Trying to teach my children about inner beauty and question "what is normal?" and to be empathetic to all people because of mommy.   Anyway, that's my alopecia experience in a nutshell.

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