Find other people with Alopecia Universalis

Thought I’d see if anyone has experienced this before. 8 years with AU, 6 of which were pretty damn hairless. The last 2 years I’ve had some minor hair growth. The last few weeks it’s kind of amped up—and it looks like someone dropped a hair egg on my head. That is, the hair yolk spilled out over one side and around a bit. Not full hair re-growth but funny blond and darker hairs all mixed up. Definitely not something I’ll keep around as it looks somewhere between a tiger stripe and an egg yolk pattern (in my limited view of it) but an interesting development none-the-less.

Thought I’d pass along a link to Bald Girls Do Lunch, a non-profit for women with alopecia based in the NY area.

Bald Girls Do Lunch provides new and valuable opportunities for women with alopecia areata – an auto-immune skin condition which causes the partial or total loss of hair on the scalp, brows, lashes and body. We are a not-for-profit organization dedicated to improving the self-confidence of women who share the challenges of this condition.

Go BGDL!

I received an email today from Rietta in Marysville. Looks like there will be a Alopecian b-ball meet up at the 1/20/2005 Sonics vs. Raptors game at Key Arena. Basketbald?

Hello,

I am sending you all the letter that I am giving to the editor of my local paper concerning the awareness event at the Sonics/Raptors game Jan 20th. This is as an example for those who might want to contact thier local media. I personalized the press release that NAAF provided on the web site and printed it off . I included in my packet Charlies biography as well as a few brochures produced by NAAF for futher information at thier fingertips.Take Care

Rietta R Costariettac13@hotmail.com

I pulled the following numbers from a previous conversation on this goal. I went to a new general practitioner doctor last week for a physical and he had no idea about the statistics for AA, AT and AU. As I recall, my original dermatologist was a bit fuzzy on the stats of alopecia, too. The doc did say that I was the first AU patient he’d seen in 13 years of practice. Let me know if this looks right:

• 2% of men and 1% of women in western society suffer from some form of alopecia areata
• about 2% of those have totalis or universalis (so about 1 in 2,500 men or 1 in 5,000 women)
• but then only 2% of that 2% have permanent totalis or universalis (so that makes 1 in 125,000 men or 1 in 250,000 women)

1. My dermatologist told me that alopecia was democratic by race and sex (but the above figures don’t support that)
2. the second bullet point stat lumps AT and AU together, so it seems difficult to arrive at an accurate %-of-people that have AT or AU.

If anyone has insight into these numbers I’d love to hear. I’ve always been interested in the number and make-up of people affected by alopecia areata, alopecia totalis and alopecia universalis.

June Secreto was kind enough to send out this link to the Alopecia mailing list (I believe it’s for AK, WA, OR and ID). Welcome! The posts further down the page are probably most useful—particularly the ones talking about biotin. If anybody else has helpful tips we’d love to hear them.

Oh – I’d love it if other folks would post profile pictures so I don’t have to look at just my bald mug on this site ;-)

I ran across this highly evolved hairless cat at Alyssa’s house yesterday. I’m not sure of the breed, but they’re all hairless. Cute little fella.

I received an email today from a parent in Germany regarding biotin. I’ll keep it anonymous:

Dear Daniel,

I have a son who’s ten years old and lost all his hair by end of last year. All doctors we have asked for help couldn’t do anything.

Now I have found some information of you in the internet. You suggest to get Biotin. Has your hair grown again due to Biotin meanwhile or could it be helpful for your nails only.

Sorry for those short sentenses. But my English isn’t good enough to write what I really feel to write. I would appreciate so much to get any reply from you.

Thanks a lot and best regards,

Two comments on this:

1. Biotin has really strengthened my nails. I take 2,500mcg a day and it doesn’t appear to have any side effects. It just keeps my nails stronger. They’re still about 50% of my pre-Alopecia strength, but they don’t chip or bleed as used to be the case before I started taking biotin. I was actually concerned about losing some of my nails at one point, but that seems to have been completely remedied by biotin (see footnote).

1. I haven’t had any hair regrowth post-biotin (but see my footnote)

footnote
I’ve had Alopecia Universalis for 7-ish years. When I first contracted AU I lost all my hair in about 2 months. At that point I was completely bald—I likened it to dolphin skin (not a stich of hair). However, in the past 3 years small baby hairs, and in some cases regular hairs, have begun to appear. None of this looks like regrowth. That is, it’s sparse and doesn’t gain any ground over time. I shave a tiny patch on top of my head once a week.

I make statement 1 and 2 above figuring that the hair which has appeared in the last few years is part of the AU cycle. I infer this from the stories of other AU people who don’t appear to be taking biotin. But that’s as scientific as my thinking gets. There is no control group so it’s hard to say if biotin encourages small amounts of sparse hair growth. Even if this were the case biotin should not be represented as a hair growth solution. It’s often advertised as a hair and nail nutrient, but I think that’s advertising rhetoric for the non-bald world.

I met a 27 year old female from NYC w/ AU on July 4th weekend. I was in Northern California playing the High Sierra Music Festival in a small town called Quincy when I spotted a fellow Alopecian standing in line. Actually, Alyssa spotted her the day before and told me about it so I was on the lookout.

I immediately walked over and asked her if she had Alopecia Universalis – which she did. She looked fantastic – completely bald with no wig or head scarf. We talked for a few short minutes, but she said she lives in NYC and wears wigs and head scarves but also goes bald in public when she feels like it. I wish I could remember her name, but it was a quick meeting.

One thing I noticed about this person was her extreme confidence which really allowed her to pull off the bald female look. Most ladies I see in public usually cover their head (wig or scarf). That’s a great look, but I was really taken with this lady’s ability to own her look.

Mara works a block away from me in Seattle and has AU – she also rocks the bald look and totally pulls it off. I’d like to see fellow AU-ers post pictures here. I’m getting sick of looking at my bald head ;-)

I met a fellow alopecian at Cafe Vita in Seattle, WA today. Interesting lady who had alopecia from birth, then got much of her hair back from 18 to 28, then lost most of it all again (her current state). She turned me on to the wikipedia page devoted to Alopecia.

1. Alopecia Areata (patches of hair loss)
2. Alopecia Totalis (no hair from the neck up)
3. Alopecia Universalis (completely bald body)

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.

• 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!