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Is there anyone using this website who hasn't lost all their hair?
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
Replies to This Discussion
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Permalink Reply by Belladaball on
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I haven't lost it all...but it has been very progressive since I noticed my first bald spots on September 19, 2016. Then I quickly noticed it was falling out and thinning profusely all over.........and in retrospect I realized it had been thinning all summer but it never dawned on me that I was actually losing my hair until I noticed the bald spots.
I'm a 50 year old woman. As of today, about 4 1/2 months since noticing my bald spots (one above my left ear and one on the back of my head), I have lost 75-80% of my hair all over, have some un-coverable balding AREAS and am wearing a wig full time. The good news is, the original bald spots have very thick growth (which is still very short) and I can feel re-growth on probably every single hair that I've lost! They all fell out at such different times, and - of course - are growing back accordingly so the regrowth is not even. I never thought I would be able to get used to wearing a wig, but I actually have - it's not a big deal at all to me anymore.
When talking to friends about it, I say that out of "5000" stories I've read, there are literally 5000 DIFFERENT stories, so it's literally impossible to know what will happen in the future. I am thinking positive and anticipating the best outcome - regrowth with no recurrence! I think I have lost a few eyebrow and eyelash hairs, because I see them on the sink, but so far nothing noticeable.
Dermatologist prescribed steroid cream, which I don't use. I was lucky enough to be having regrowth even before I visited the doctor, and steroids scare me so I am leaving that alone and going with natural supplements. My blood tested low on Vitamin D, so I take a multi-vitamin, an extra D3 supplement, 1500 mgs of turmeric (need to get the kind with black pepper infused so it absorbs properly) and 10,000 mg of biotin. Not sure if it's helping my hair growth, but I had also stopped taking Wellbutrin once diagnosed with alopecia since anti-depressants were listed as a possible cause, and I'll tell you what - I feel better emotionally than I have on Wellbutrin for years.......I think it might be the turmeric.
So, no to the question - have not lost all of my hair, I've got "pattern baldness" but it's all coming back. The supplements I am taking have greatly improved my mental health (the turmeric has also greatly reduced bloating around my midsection) so if they are not contributing to my hair growth as well, it's okay - I feel better and healthier than ever!
Good luck and blessings to you all!
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Thanks
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Permalink Reply by Suzie on
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Here's my story: First developed AA as a teenager with loss on just the back of my hair. I was devastated because it thinned out so bad you could see the back of my neck. My mother took me to our family doctor and he had no idea what it was. It eventually all grew back on its own. Fast forward to the age of 26 when I had my second child....I developed RA (Rheumatoid Arthritis). It progressed so bad I was on several biologics (Enbrel, Humira and Orencia for the next 24 years. After I was on the Orencia, I felt so good that I weened myself off of it. Well.....I noticed about 6 months later bald patches. My Rheumatologist said it was Alopecia Areata....what was that I wondered? I googled it and I had my "aha" moment. This is what I must have had when I was a teenager and it was dormant all of these years. I went back on Orencia thinking that would help but the AA just kept getting worse. Desperate I spent lots of money at the Dermatologist getting steroid injections which helped with some of the patches but NOT with the shedding. I asked my Rheumatologist about Xeljanz, which is suppose to help BOTH RA and AA patients. So far after being on it for 4 months my patches are growing back. Hair is still thin, but hopeful that will come back over time.
I looked into wigs, hair pieces, etc. Finally saw a specialist in Florida who is great and specializes in women only with hair loss issues. After seeing her she said I was a candidate for glued in hair extensions. I was worried these would damage my hair, but I decided to do it anyway. I have had them taken out and put back in once and will have to do again in a few weeks. It was pretty expensive, but so worth it for me. I was stressing out over the hair loss which probably continued to MORE hair loss. But it's so hard NOT to think about it. All we alopecians want is to feel ourselves again. For me, the extensions were the answer. I am thankful for the hair I have and hope I do not lose any more.
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Permalink Reply by Heathbar_crunch on
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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...
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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.
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Do you think turning AU is a possibility?
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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.
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My doctor said it is rare but doesnt seem to be according to this site
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On another note..reversing AU through xelnanz seems to be successful..
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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.
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Permalink Reply by RestlessBear on
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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.
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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.
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