Find other people with Alopecia Universalis (read all 10 entries…)
Bald to the bone
I’ve had Alopecia Universalis for 6 or 7 years—but I’ve only met a couple people with AU in that time period. Alopecia Universalis involves complete hair loss. There are three types of Alopecia :
  1. Alopecia Areata (patches of hair loss)
  2. Alopecia Totalis (no hair from the neck up)
  3. Alopecia Universalis (completely bald body)
I’m not looking for a support group so much as a group of people to discuss certain aspects of the disease and to get/give advice. My three biggest questions:
  1. What percentage of AU people get their hair back completely?
  2. Do others get baby hair in places (I get little blond hairs on the top of my head)?
  3. What percentage of the population has AU? I think it’s about 1 in 10,000 people.
The advice I’d like to give other people:
  • Taking 2,500mcg of Biotin a day has really helped the strength of my nails—amazing really
  • headbands work well for keeping the sweat out of your eyes when running or exercising – and bald people with headbands look cool in my opinion ;-)

Alopecians unite!



Comments:

Another AU in Seattle

Dear Daniel,
I ran across your site while looking for a decent wig maker in Seattle, not easy and easy task. However, I’ve been bald with AU for 19 years and it hasn’t been too bad.

It’s a bit more difficult for women considering all of the vanity issues we live with, but wigs are a lot of fun. I love being a red head, they have the most fun.

When I was in the Army, the other soldiers thought I was HOOAH for shaving my head. I gave up on explaining my situation all the time, but they just thought I was hard core. Remarkably being a bald female was an asset—I had finally found a place where being bald also meant that I was cool!

tough for women

Agreed that it’s much tougher on women simply because of the social mores in place as it relates to bald women. It’s pretty natural anymore for a man to be bald.

I like the Army angle – never considered that would be a place that folks would accept a woman’s baldness as “cool”. I should also mention that I bumped into a 27 year old AU lady in Northern Cali a few weeks back. She was totally bald and not wearing a wig or head scarf. I’m forgetting her name – but she looked great. She told me she lives in Manhattan and does wear wigs a lot of the time. However, she goes bald some of the time and she claims that being in a big city allows for a bit more freedom in that respect. You stand out less and people tend to have a wider range of what’s acceptable and attractive for a woman. Anyway, just a story.

Good luck finding a good wig maker. There’s a NW AU group that meets every couple months. I haven’t been in years—but the lady that runs the group is named June Secreto. Let me know if you need her contact info. I know they spend a lot of time exchanging cosmetic tips about local wig makers, tatoo artists that apply permanent eyeliner, etc. Thanks for dropping a line!


 

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