Comment by Dominique Cleopatra on February 7, 2015 at 4:48am

Probably because it's not life-threatening nor terribly common.

Comment by GardenJess on February 8, 2015 at 12:46pm

Despite statistics, I'm left wondering how common it is. I had never met anyone, not in school, college, daily life, that I knew to have alopecia until I went to an alopecia support group picnic. I have however, heard a bunch of second hand accounts, such as my aunt lost her hair, or my brother in law has alopecia. I have to think that it just isn't something most people talk about, and that is one reason I feel good about being open about having alopecia areata. I also agree with the non-life threatening aspect of the disease being a reason it can lie low. I'd be all for a cure, but I am either graced with a larger perspective or have somehow conformed to the idea that being openly upset about one's hair loss is simple vanity and that alopecia is not something to publicly rally around.

(And please don't think that I find wrestling with my weird tufts of white hair, my psychological and physical discomfort with wigs, and my general sense of being ugly or a freak to be mere vanity, nor would I ascribe anyone else's desire to look or feel normal to vanity.)

Comment by Cheryl, Co-founder on February 9, 2015 at 3:58pm

I tend to believe it is because most of us are not willing to talk or show our alopecia and prefer to keep it private.  I am finding that after over 20 years of having alopecia and living my life as a bald woman that more and more people have heard about the condition.  People don't tend to ask me about my baldness as often as they use to and when they do it is usually because they have or know someone who is experiencing hair loss and want to encourage or share with me their journey.

Comment by Pat on February 9, 2015 at 9:58pm

I also think women have come to associate baldness with something shameful as the old adage "hair is the crowning glory of a woman" still seems to hold true. Its true that young girls/women can mostly pull off any haircut whether it be shaved head, partly shaved, bright blue mohawk or whatever and people accept it as part of the way youth express themselves. However, as we age we begin to follow social expectations in our appearance and only few older women dare to be different. Even an older woman wearing her hair long is not seen very much or viewed by others as not appropriate. It also depends on personality to some extent. There is such a mix of feelings when we lose our hair!

Comment by Cheryl, Co-founder on February 11, 2015 at 12:05pm

Pat, it is interesting that you say that.  I just turned 50 last month and was thinking this morning how was I going to approach this next chapter of my life.  I thought about how I approached my alopecia as a younger woman and how I just took some chances and decided at a time when everybody was wearing wigs to do differently.  It started me on a journey of self-discovery.  What it meant to be bald and a woman and could I still find ways to show my femininity.  I decided earlier today that I was going try to handle ageing the same way.  Find my own way to be 50+.  I really appreciate when I see a older woman with gray long hair.  I sense a certain confidence in her and hope I can approaching ageing in the same way.

Comment by Pat on February 11, 2015 at 6:35pm

As a 65 year old on 22nd February aging with Alopecia is a challenge for sure. As you say there are some older women that inspire us as they age. One thing about wearing a wig is that I'll only be as grey as I want to be lol...so far not one grey hair in sight...even the hair I shave off the top of my head is still brown. My nana had brown hair well into her 70s.

Comment by Cindie on February 14, 2015 at 7:24pm

I agree with Pat.  And as an African-American woman, my own personal experience has been being "derided" for being lazy, and not "taking care of my hair", even though alopecia is a medical condition.  Most AA's don't understand that, and I have found, in my particular circle, that no amount of explaining, or providing information makes any difference in the "this is what I was raised to believe" opinion. 

Comment by Pat on February 15, 2015 at 1:07am

Yes that's very true Cindie, people just don't get it and keep saying I should take this or that suppliment...nowadays I just thank them and drop the subject, unless it is a person who I haven't explained it's an auto immune disorder and then I go into more detail. It used to get me really frustrated and feeling like I'm somehow to blame for my hair loss. Now not so much, much easier to live with that way :-)

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