Comment by itsmeehtalia on July 4, 2013 at 2:36pm

Hi! I'm not on here often, but I feel for you and many others on here do. IT IS A ROLLER COASTER. It's good to laugh. I had alopecia since I was a kid. Except, I had all my hair for years!!! Then around 20.. It came back and like you, was insanely disturbing as the hair loss got worse, then better, then worse, and so on.. After having my daughter, all of it fell out.. My hair, eyebrows, eyelashes... Everything.. I thought I was doomed to universalis.. My dr told me nope.. I still have hair in some places, so fear not (yea, right!?) he tells me that, I have to be patient, and most of all be positive (this is part of my treatment plus a topical, lol). Your mental stress and worry about it can make it worse. Hair naturally falls out. If you find hair that falls out and there's breakage. On your scalp it's little short spikey stubs along the edges of where your hair is, that's alopecia hair falling out. If you find hair that falls out and has the follicle, that's natural hair that falls out and will be replaced. My hair is slowly but surely growing back too.. The small fine hairs get thicker as they get longer. Hair grows in stages. So it'll start of very fine and thin. And it grows sporadically and crazy! It drives me nuts! But I have arm hair, armpit hair, (both which I would prefer to have stayed gone, lol) my eyebrows are back, and my eyelashes are back.. So TRY..(very difficult) to stay positive. I hope that you get the results your looking for and if you have questions I can answer let me know.

Comment by Sierra D on July 6, 2013 at 11:50pm

Thank you for your kind words. I haven't shared my story in so long because I am just so tired of the feelings associated with it. I keep telling myself, "If I hadn't done this..." or "If I had only done that..." It's hard not to blame yourself. It's helped me recently reading more on alopecia knowing that it's not something I did or didn't do, if it's going to happen, it just will. I have already resigned to losing all of my hair, so I don't have high hopes of keeping anything on my head. It's not worth salvaging anyway. But, I have noticed a huge difference since even a month ago in the amount of regrowth I am experiencing. It's hard not to get UBER EXCITED about that! But... I am trying to keep that in check. If I were to lose the hair on my legs or underarms or even my face, I would do a joyful happy dance. I could care less about those.... eyelashes though, those I am kind of attached to. What bothers me the most is my friends who I tell who say "oh... well how cool is it to try all the different wigs and stuff?? How fun... you don't even have to style your hair each day... just throw on a wig!" Umm. NO. lol. Wigs are NOT the same when you have been forced into wearing one. And don't act like it's all daisies and roses until you start going bald, then you will understand it's not "fun." lol. Anyway. And luckily my new doctor is really trying to hunt and find a cause for this hair loss, I'm starting to think it is going to be dissected down to AA though in the end. He said he has narrowed it down to an auto immune disorder... but I don't have any other symptoms than hair loss. So I really don't fit the bill for any other disorders. But hey, at least someone took the time to sit down and hear me out, draw some labs and give me peace of mind! There is no worse feeling than being brushed off by your doc over something like this! They just don't get it sometimes. This is a huge deal! Even if it is just considered "cosmetic." To a female, it is much more than that! Anyway, thanks for the reply and I really wish you the best of luck. I hope that you can stay positive mentally and I thank you for the lesson on the whole hair follicle thing... I was wondering about that. I run my hands through my hair and have a handful and I'm like, Why are all the follicles attached to these???? Oh crap, they are never coming back! So that helps. lol. I hope that you can stay positive and get all your hair back! Thank you!!!!

Comment by Epo on July 10, 2013 at 12:59am

I am going through the same roller coaster ride as yourself, down to the spot appearing after starting a challenging semester at school! I'd taken time off from my difficult college, and decided to go back for the Spring 2013 semester. I found my first spot and the first instances of shedding that first week of class! Traumatizing, but I went to my dermatologist the next week, and got shots. I had a little patch in 2011 that got filled in with the steroid shots, so I thought it would be the same as before. Fast forward to now, July, and there is minimal regrowth (though there is SOME which I take solace in), many patches on my head (about 13 now, though just a few days ago, I only had 10!!!), and a regrowing eyebrow and eyelashes (thank god!!!!). I am 24, and female, so I totally get the whole huge deal thing. Thankfully, my family and friends have been supportive, but whoa, it is still traumatizing. I get that you and I are supposed to come to terms with our alopecia at some point, but since this is just the start, I think it is normal to have really high highs and really low lows. Some days, I think about my patches really little, but other days, I bawl and think "oh my god what am I going to do?!!"

I've seen SO many doctors, and gotten so many second (and third and fourth) opinions, but the consensus over all is : alopecia areta, and there's nothing that can be done except to treat my body well so that my body can get back to normal, and willingly produce hair again! I haven't gotten an allergen test done yet though, so I am going to get that done soon to rule out any allergens. And about the doctor narrowing down that you have an autoimmune disorder...alopecia areata IS an autoimmune disorder, based on my doctors and hair loss specialist! So I think you really *just* have alopecia areata (lol, JUST. Which is so loaded since it is really traumatizing and sucks for a girl in her twenties!!!!) I currently use the following treatments : steroid injections, stimulating hair masks from my hair loss clinic, flaky/itchy scalp shampoo/conditioner/tonic also from my hair loss clinic (the Philip Kinglsey Clinic, if you are in NYC or London), the Anastasia Beverly Hills eyelash serum and have one pill left of prednisone. Haven't seen any major changes from any of these treatments, except that my scalp DOES feel a lot better, and my right eyebrow/lashes are growing back really nicely. The prednisone gave me crazy side effects that have subsided and are basically gone now, but I don't know if it did anything.

As for the brushed off feeling, thankfully my doctors have all been supportive and gone the extra mile for me. They want my hair problem to be solved too, and so they've been doing everything they can do. They get that it is not just cosmetic. Yeah, they've said to me "on the brightside, you don't have any other issues AT ALL. You are the picture of health." which doesn't make me feel much better, but they then say "I get the mental anguish and strain. It sucks, especially as a young adult." I've seen a therapist before this whole crazy alopecia, and once the alopecia and shedding just started to get worse and worse, I started telling my therapist about it. She has helped me A LOT. I love my family and friends, but my therapist totally has helped me stay as mentally postive as possible.

For full disclosure, in the event that it helps anyone who is reading this, I think I know why my alopecia was kick started and got so bad. Between August 2012 and January 2013 (right when my first patch came, I stopped), I was insanely working out (3 hours a day/7 days a week), ate only 1400 calories a day (which for a 5 foot tall girl is normal, BUT not enough for someone who was crazy working out!), and was abusing colon cleanse (not for weight loss ironically enough. I literally wanted to regulate my BMs as gross as that sounds!!!). My hair scientist, normal GP and normal dermatologist all said "D'oh!!!!!" when I finally admitted all this to them (at the end of April 2013), and they all said that my abusive actions in the Fall 2012 coupled with my general high stress almost definitely set off this alopecia. OBVIOUSLY those things may not have wrecked havoc on my head, but with all that is known about alopecia, I really did not help matters. I've been eating 4-6 meals of mostly protein and vegetables since February, and have stopped all my insane behaviors, but it's been slow and unpredictable thus far. Lots of shedding still, lots of patches still, lots of stress and anxiety still.

ANYWAY sorry for the super long post : just wanted to let you know that you are so not alone, and I totally get what you are feeling. "IF ONLY.." is what I think sometimes when I'm feeling sad, but the reality is...it's already been done. We can only move forward! I hope we all get our hair back! :-)

Comment by Sierra D on July 14, 2013 at 3:26pm

Thank you for the kind words. It is so nice to have a place like this to go to and realize there are people out there who understand the feelings associated with all of this. I am really glad to hear that you have supportive doctors. That has probably been one of the biggest emotional upsets to me, feeling that I have no one to turn to to help me. And it is so hard to take everything else that's positive for granted. I have no other health problems other than this, and I need to remind myself of that more often!

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