My daughter Vanessa has had some form at AA (AT or AU) since the age of two. About 8 years ago she lost all of her hair with only eyebrows and eyelashes growing back about 2 years ago. She has hair growing back on her scalp for the first time in 8 years. It looks like about 75% of ther scalp has dark fine hair growing that is getting thicker and longer as it grows. I am more afraid then excited. This has been a devastating condition for her. She has never found any type of comfort level with having AA and she has missed out on so much because of her feelings. Nothing we have ever done, counseling, NAAF conferences, our support as a family have ever helped her. Well at least from what I can tell. She is so excited to see some hair and I'm sure that she is hoping this is the answer to her prayers. I'm so afraid of how it will set her back if it grows and then falls out again.

There is nothing new we have done to spur this hair growth. No new medications, no more or less stress, no unusual activity, nothing. We still live in the same house we have for 11 years, it seems her hair literally turned back on. I will say I have started praying more again for regrowth, but I know that Gods been listening all of these year even when it didn't grow back. Maybe he has a purpose as to why its growing back right now or maybe it's just part of the journey with having AA. I know Gods love and care for her is not dependent on whether she has hair or not.

I'm not sure what to say to her. I don't want to lesson her excitement just in case her hair does stick around, but I don't want her to be devastated if it doesn't. She can have some pretty dark periods when her AA is really bothering her. I'm just not sure what to do.But, it does go to show that hair can grow back at any moment. It's nice to see her hair follicles are still capable of producing hair. It would be wonderful for her, if her hair stuck around.

Views: 11

Comment by Tallgirl on June 20, 2010 at 11:10am
Of course it would be wonderful for her. You didn't say how old she is now, or what kinds of things she has been wishing she could do that she felt she couldn't. As it grows, perhaps you could make a list and plans to take advantage of the "haired years" to catch up on all those opportunities that SHE felt she lost. Plan to do them all, and take a lot of pictures while she is exploring her new world. Then, in case the hair comes and goes, she will at least have life experiences and photos to prove it in any years she may possibly have hair loss in the future. The fun experiences may satisfy her soul and provide proof for her that, yes, "she can." Then, maybe, just maybe, she will have developed the friendships or job/hobby skills to sustain her through hard times. If she journals, then she can also have that record to look back on of her accomplishments when she doubts herself. When she is more mature, she may end up realizing that it is her character, attitude and smile, not her hair, that added to those accomplishments. If she realizes the value of character, attitude and smile in tackling life and love, even if she has to wear wigs or hats, she may figure out that she can do almost anything on her own power. Just remember: she will be growing older and having more mature insights and lessons as all this happens.

Hormonal changes seem to mark hair growth or loss for some women, too. I noticed that I had more hair growth during years I thought I was "in love." Many women had growth when pregnant or nursing. Some women lose hair when approaching menopause. So, it could be biological more than religious...who knows? As for me, I have albums full of proof of college, travels, wedding, children and visits with friends to sustain ME through my now-totalis older years. I just plunk on a wig I like, and live life. I know who I am.
Comment by Charlotte on June 20, 2010 at 11:46am
Tallgirl - thanks for your comments they make sense. I think your right, I should encourage her to enjoy the things she's been missing (swimming, sports, ponytails etc.) I keep thinking I need to protect her from disappointment but I guess you don't ever live if your confined to those feelings.

Vanessa is 19 so still a young adult. Its been a tough road, shes never found any peace with AA. She hides it 100% and is very ashamed. Funny thing is most people who know her already know. She's worn a human hair piece since shes been in the 4th grade (thank you Locks of Love) and im just not sure that was the right thing to do. Maybe if I had encouraged her to go bald, she would have been more conifident. Maybe there was an underlying feeling that baldness was something you should hide. Although I have always allowed Vanessa to make her own decision and find her own comfort level, maybe I should have established a better way a coping when she was younger. She still lives in a constant state of hiding. Its so sad because she is such a wonderful person. Smart, interesting, kind, and very beautiful. I love her baldness and think it makes her look exotic. She however HATES it and everything about it. I think the people who have rejected her over the years has really taken a toll on her. Funny things is she has a large group of friends who care for her and have had boys who really have liked her but its never okay for her. She literally doesn't have one friend that she has ever confided in about AA.

As a mother, its really been hard to me to see her at her darkest points, in fact a time really frightening. Nothing we have tried, couseling, NAAF, support as a family have ever been able to help her. I feel terribly guilty because this condition comes from my side of the family. My grandfather, Dad, and 1/2 brother have all had AA at one point in their lives although it was simple spots that grew back over time.

Well, I think im rambeling at this point. :) Again, I appreciate your comments and you make a very good point.

Thank you! - Charlotte
Comment by Tallgirl on June 20, 2010 at 2:33pm
By the way, Charlotte, I hid, too. I was a brainiac and shy artist, too. So, I made the trusting, deep friends at church camp, away from home and the prying high school eyes, and those friends were my newfound family. Then, one boy noticed a slip of my headband at a conference weekend, and shouted out, "Hey! You're bald!," to my mortification. Luckily, not many people heard, but I had to explain about my alopecia then to him and some others. Once the cat was out of the bag, the church camp folk were gradually told I had a wig, and they were supportive. The farm boy I fancied, also from camp, let me know by college freshman year that hair loss didn't matter. So it was then, at 18, that I finally believed love might be in my future. This "hope" probably released my pent-up social self, and I partied and enjoyed college, even with the wigs. Then, at 20, it grew back! So, I am a believer that love, dancing, wine and beer (sorry, but true!) played a part in my decision to enjoy life. (It was when I had a rude mother-in-law and marriage troubles later, different guy, that it fell out again. Late 30s. The hubby didn't accept the hair loss, but I have since met men who do.) You just never know. I sometimes think that if I had been hardened earlier by NOT hiding during ages 10-18, that I would have handled it better when my students teased me as a teacher. My response was adolescent, emotional. I realized that these little girls and teens on this site are waaayyyyy bolder that I ever was, and may get through this better than I did in adult years, due to their strength. One thing for sure, when a gal makes her own decision what she would like to try, it gives the self power. Offer her a lot of options, and be ready as a parent to help her do what SHE thinks will make her happy. After 18, the "Why don't you just..." beginning to well-meaning discussion may be offensive to a woman; so offers, even if in a card or writing, may be less intrusive until she decides if...IF...she wants help. Sounds like you have given her physical options and family-related options. Would financing a cool trip for her and her best friends to a place where turbans are accepted wear for women be possible, so she and her friends could share both the experience AND the headwear?

Another thought: does she feel hpoeless about having children if she thinks it will be inherited? (None of my kids have it.) Maybe she can start exploring the grown-up questions on this site, too. At least here, she can tell others without threat. I never knew another soul with alopecia until my 30s! Maybe advice from alopecian WOMEN could help her breathe a sign of relief.
Comment by Tallgirl on June 20, 2010 at 2:35pm
Misspelled "Hopeless." Oops!

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