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Find other people with Alopecia Universalis (read all 10 entries…)

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 :

Alopecia Areata (patches of hair loss)
Alopecia Totalis (no hair from the neck up)
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:

What percentage of AU people get their hair back completely?
Do others get baby hair in places (I get little blond hairs on the top of my head)?
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:

brianna22

My Boyfriend Has AU

Hi, my name is Brianna. I don’t have AU…but my longterm boyfriend does. I can answer one of your questions and say that he does grow those little blonde looking hairs as well…it seems to be common. He lost his hair around the age of 13 and he has not had it return since he is now 25. I have absolutely no problem with him having AU I actually love it if anything. It is a part of who he is and I love him and everything about him. I know some of the difficulties with dealing with having AU through him. It makes me sad to think that sometimes he thinks one day I will wake up and change my mind about it and not be okay with it. He is still in need of accepting it and I try to do my best to help him with that. He constantly fears that his hair will come back and living for so long without it it is understandable why he feels this way. He is also in fear of it never coming back at the same time. I was wondering if anyone has any advice or can give me their perspective to maybe help me understand him and the trouble he has with accepting it.

Nov 14, 2006, 07:59PM PST | Parent | Respond to this 1 cheer

Daniel Spils

Hi Brianna. Thanks for the blonde hair tip. I was wondering if that was true of other AU’ers! I heard from another that they, too, grew litle blonde hairs. Good to know.

It sounds like 3 issues with your bf:

he fears that you’ll not find him attractive
he fears his hair coming back
he fears his hair never coming back

You seem to have pegged it—he’s still (understandably) struggling with accpeting his self image with Alopecia Universalis. You’re supportive of him and obviously find him attractive and there’s not much more you can do to convince him that he looks great.

I suspect that folks who get AU at a younger age may have a more difficult time with it in a way. In my case, I got full blown AU around 29/30. That was 8 years ago. But I went through adolescence, puberty and all that as a normal genetic kid. I can imagine that skipping the hair part(s) of that while everyone around you grows up could be difficult. In my case, I’ve had a full beard and such—been there done that. So, I don’t feel like I missed out.

I don’t know if that helps much, but my gut instinct tells me that he may have insecurities based around losing his hair during the transition from adolescene to adulthood. If that doesn’t sound right it may be time to call in Dr. Phil.

Self image is a tough one because it’s a battle mostly waged in our own head. It sounds like you’re doing as much as you can. The rest is up to him.

Nov 15, 2006, 03:04PM PST | Respond to this

babybaldy07

heya

t i always think ill never get a boyfriend bcoz of my illness but the fact tat u r wit him n dont care bout it at all really inspires me tnks a mil xxx

Feb 05, 2007, 06:16AM PST | Respond to this 2 cheers

Comments:

My Boyfriend Has AU

heya

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