Daniel Spils

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!

Dec 16, 2004, 02:11PM PST | 7 cheers


Comments:

jeffg

bald to the bone

hi i am also bald to the bone i used to wear wigs but really like the shiney bald look and enjoy being totally bald. would also like to meet other alopecians. there are a few who live locally but have never spoken to them

Aug 23, 2005, 10:13AM PDT | Respond to this

Daniel Spils

welcome

Good to hear from you, Jeff. I attended an Alopecia support group meeting at Virginia Mason a few years ago. It’s organized by June Secreto—a great person. At any rate, the meeting was about 35 people. All were women except me and another fellow. For obvious enough reaons, men tend to opt out of meetings once they get the facts.

My hope is that this thread becomes a nice place for people to exchange any info they have about AU that seems hard to come by. The comment further up this thread by username: picard2bridge was particularly insightful.

Aug 23, 2005, 10:51AM PDT | Respond to this

babybaldy07

heya

hiya im fully bald to!!!i wear a wig all the time part 4rm in my house!!!i have very little confidence to go out bald!!!but all my friends know bout it!!!its the hole boy thing tat bothers me all my friends have seen me bald inclding some of the boys but i think im at such a big loss wen it comes to getting a boyfriend hair is one of the things they look for or is it????

Feb 05, 2007, 06:28AM PST | Thread | Respond to this

Daniel Spils

there's someone for everyone

babybaldy07 – nice to hear from you. I can understand that some boys may not know what to make of a bald girl—but I guarantee you that there are dudes out there that will get it and enjoy your bald look. For real.

Keep your head up and be bald and proud! You look great.

Feb 06, 2007, 05:03PM PST | Respond to this


 

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