Is there anyone using this website who hasn't lost all their hair?

Hi All,

I am writing to ask whether there is anyone here using this website who has NOT lost all their hair i.e. had severe form of alopecia areata such as universalis or totalis. It seems to me there is no one who has bald patches and the condition remained bald patches and that everyone using this website has progressed. If someone has not please let us know your story.
Thanks

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Permalink Reply by Heathbar_crunch on March 7, 2017 at 5:48pm
I was diagnosed with AA about 40 days ago after my coworker noticed a half dollar sized bald spot at the crown of my head. When I saw the first dermatologist that same day she seemed to think it was stress related and gave me some injections but said if I relax it should go away. A little history here - my sister is sixteen and became AU out of nowhere over three months last summer. Needless to say, I was worried. Since then it's gotten worse - I have three large spots (one that was the original spot) that seem to be coalescing at the back of my head. I also have four smaller spots throughout and a new small patch near the front of my part. For now I can still hide it but I'm not sure how long that will be the case. I'm seeing a new doctor at Columbia in New York who seems to specialize in alopecia so I am continuing with monthly injections into the spots. She is very nice and professional but admits she cannot predict how the disease will progress. She estimated my hair loss at 10-15 percent but she said she doesn't think I'll go totally bald. I hope she's right. They told my sister the same thing...
Permalink Reply by Patches on May 6, 2017 at 7:10pm

People whose spots filled in aren't on this website, because they don't need the support. This website is great because it helps us connect with other people who understand what we are going through, but it can also be a scary place because so many of us are struggling, both cosmetically and emotionally.

The first spot I ever found filled in completely after injections. The next two spots on my head have filled in partially with injections. I just found a new spot near my neckline today. Meanwhile, I have lost almost my entire beard, and I just lost a tiny bit of my eyebrow, but anticipate progression, which I'm fighting with minoxidil.

I'm 32 and this has all happened over the last 2 1/2 years.

Of course there are cosmetic success stories. For some people it all comes back. But that can't be the only measure of success.

We have to find acceptance. I don't know how yet. I haven't accepted it. But I know that I have to. I have Alopecia. Period. If I decide that the only way to be totally happy is to not have Alopecia, then I have basically decided not to be happy.

Permalink Reply by Patchesforlife on May 6, 2017 at 10:57pm
Do you think turning AU is a possibility?
Permalink Reply by Patches on May 6, 2017 at 11:32pm
Sure. It happens. People on the site have talked about it. We have also seen it in people in the Xeljanz trials. But we know it doesn't happen often.

I don't have AU, I hope I don't progress to AU, and I don't think I will. But I might. And if I do, my goal will be acceptance. To reverse AU is an extreme long shot. To become happy with yourself despite AU is both more realistic and more meaningful.
Permalink Reply by Patchesforlife on May 7, 2017 at 3:16am
My doctor said it is rare but doesnt seem to be according to this site
Permalink Reply by Patchesforlife on May 7, 2017 at 3:17am
On another note..reversing AU through xelnanz seems to be successful..
Permalink Reply by Patches on May 8, 2017 at 7:03am
Ah. For some reason, I interpreted "turning" AU as reversing. I see you meant progressing to AU. Yes it is definitely possible. It also might not happen. Everyone is different. Most people don't progress that far. Again, this site is not a good indicator of what is likely to happen, because the people whose AA cleared up aren't posting here, as they have no need to.

I think what is most likely is that your AA never totally leaves. It clears up for a few years, then comes back. Sometimes you have four patches, sometimes none. Sometimes you are missing half an eyebrow. Etc. That seems the most common story to me. Which is why I think finding self-acceptance is the most important goal. I feel most out of control when I am panicked about progressing - which includes right now for me. I want self-acceptance as much as I want a cure.
Permalink Reply by RestlessBear on May 7, 2017 at 11:29pm

I am a 26 year old female who noticed a bald patch on the top of my head four months ago. It has gotten bigger since I first noticed it and is now about the size of two 50 cent pieces. I have not lost hair anywhere else, my hair is long and black and despite thinning out because such a large part is missing is still pretty thick. My eyebrows are thick as well and I have normal hair growth on every other part of my body. I have rather large side burns which I prefer to shave off and they grow back within two weeks so this hair loss is extremely scary and stressful. 

I have my first appointment with a dermatologist in two weeks hopefully she can give me some answers. I did go to my GP and she diagnosed me with AA. I had very low Iron and vitamin D levels and am now on supplements for those so hopefully the Iron tablets help a little bit. 

How does everyone deal with the stress of this? My hair is such a huge part of my identity I'm really struggling with this. 

Permalink Reply by Patches on May 8, 2017 at 7:08am
It's really stressful. We all know how you feel, for sure. The lack of control, the feeling that you are losing a part of your identity, worrying about how other people will react.

I don't have any great wise insights. I try to tell myself that life has prepared me for this, that this is a great challenge that I have the opportunity to overcome, and in doing so learn more about the human condition and someday pass that wisdom on. For people to understand this, someone has to go through it and emotionally master it first.
Permalink Reply by eolson10482 on May 8, 2017 at 1:13pm

I have never had hair on my arms or legs. When I was about 5 I had balding spots on the back of my neck and my mom said she just put a cream there and it grew back. About a year or 2 ago my eyelashes and eyebrows started falling out and I got balding spots behind/above my ears. I got a steroid lotion from the dermatologist last year that seemed to have helped and then I stopped using it once the hairs started coming back on my head. However, one year later and the bald spots are back right there, and I have a big circle spot on the back of my neck/hairline. I have gotten my eyebrows tattooed on because I was sick of penciling them on every day and about half my eyelashes have grown back in. I am hoping the steroid lotion I am trying again will work. I have NOT lost all of my hair and I am hoping it does slow down or stop at some point. We shall see!

Permalink Reply by Dominique Cleopatra on May 8, 2017 at 6:14pm
Patches here! Lol
Permalink Reply by Tallgirl on May 9, 2017 at 11:46am
I still have eyelashes, eyebrows, unwanted hair, and a ring of white head hair.

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