For those of you with alopecia universalis like myself at what age did you develop it?

Just wondering at what age did you develop alopecia universalis? And if it was in areata stage at what age did I first see your first spot and by what age did it become universalis?Thank you.

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I was 13 when it first started in the areata stage. It took about 7 months to get to totalis stage, and then only a few months after that to hit universalis. It was slow moving at first but once it really gets going, it happens fast. 
I had regrowth (with treatment) when I was 15. All good until age 18, and the same timeline occured, but no regrowth the second time around. 

Thank you so much  for sharing your experience...seems like the younger you get the areata the more severe it may be

At age 35 I developed alopecia. Patchy spots at first ... slow moving .... over a 5 month period. Then, instead of patchy hairloss my alopecia suddenly turned into a diffuse kind of shedding.

AU within 3 months. That was 11 years ago. No proper hair since. Maybe a few vellus hairs here & there.

Thanks for sharing your experience. I read somewhere almost everyone with AU would have it by age 30. Seems this is not the case 

Hi there - I had AA at ages 17 and 27 - each time one patch in the back of my head, grew in after about a year each time with Kenalog injections. Then at age 48, suddenly over a three week period, I went AU. Have now been AU for a year, on Xeljanz for 16 weeks (30 mgs/day) and absolutely no regrowth whatsoever. Needless to say, I am feeling extremely frustrated and depressed. Very hard to keep my spirits up.

Hi - I developed AU at age 54. No hair loss whatsoever until February 2017, had two very small  bald spots (like the size of a dime), I got a steroid injection and within 5 months, became AU.  It didn't take long to lose everything and I haven't had any regrowth since.   

I developed Universalis about a year and a half ago.  Quite the sudden change from a full head of hair, to alopecia areata and then to universalis.

I was about 8 1/2 - the summer before 5th grade. When my mom washed my hair she felt smooth "bald patches" -- and my hair just kept coming out during the 5th grade school year. It was terrible. My homeroom 5th grade teacher kept calling me out into the hallway and asking me if I was pulling my hair out on my own. She was asking me if I had problems or if something was upsetting me. She kept asking me, "Why are you pulling your hair out?" I was mortified. I had regrowth. It fell out completely again in 6th grade. I had regrowth. It fell out completely again in 10th grade. I gave up. I never tried to grow it again. I'm 60 years old now. I have alopecia universalis - no hair anywhere on my body. Hoping for a cure!!

Interesting question, it's funny how there simply isn't any consistency here. My hair started falling out very quickly when I was 21, skipped past all the other stages and went straight to universalis; took maybe a month. I immediately started taking steroids which I do think slowed the process for my eyelashes and brows but they continued falling out over maybe another 3 or so months until I stopped the steroids.


Just curious  - For those of us that are AU, was it a case of all your circular patches joining up that led to AU ? ... Or was it more the case of a uniform shedding and thinning that led to AU ?

 In my case it was patchy AA ... that suddenly switched to my remaining hair thinning until there was nothing left.

I'm just trying to distinguish it there are different pathways to becoming AU ... which may require different diagnoses/treatment accordingly.


I had a few patches early (3) that I didn’t really pay attention to.  After that I got more patches and thinning.  Then hair started falling out in sheaths and clumps.  My remaining hair got very thin and straw-like because I have hypothyroid / thyroid issues.  Then everything but a couple of patches fell out and I shaved those off.  The remaining patches fell out shortly thereafter.

Hi there - here's how it went for me:

Age 17 - one patch AA on back of head - filled in with Kenalog injections after one year

Age 27 - same thing as above

Age 48 - two patches AA on top of head in April 2017; first week of June 2017, hair, eyebrows, eyelashes, body hair starting falling out extremely aggressively with no discernible pattern; absolutely everything gone by mid-July

I had no AA events in between those I describe above, and in those intervening years I went through a significant trauma and also had two kids. There was no event in my life that I can tie to the sudden AU. I remain 100% hairless today, despite high dose Xeljanz treatment.



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