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Comment by Lexi on January 29, 2012 at 2:23pm

Hey everyone....haven't been on here much lately, work has got me so very busy. But keep the posts going. It surely helps for others to know that we are not alone in this strange pattern of Alopecia. I often wonder if people I work with, the catty women that they are, some of them. Will ever wonder why I only wear my hair the same way every day. They all change up their do's on a regular basis. I need to keep what I have left down to cover where I am vacant. No versatility. I am on this site today, cruising again for the perfect wig that someone actually has tried, owns, and loves it.

Comment by Christine on January 24, 2012 at 1:28am

Hi cokeman, sounds like we are very similar in our experience, I think the white hairs are Alopecia Hairs, at least that's what I call them, I had little to no gray hair when I developed this, and the white hairs are very different than gray hairs (now that I do have some) I don't think that they were always there and turned white, because I can see new short ones growing in that area too. I really lost a handful of hair today, feeling kinda bummed, I have a couple of new patches, like you I don't have much hair on my arms, but being a woman my arms were pretty fine blond hairs anyways, I also have almost no hair on my legs. I've also lost my eyebrows, I so have a bit of one left but the other is gone completely. I thought that losing body, and eyebrow hair was a precursor to AU, and has scared the bejeebers out of me for ever, but I have stayed pretty steady I'm hoping and praying that this current losing pattern stops real soon, and I start filling back in. It sounds like your doing pretty good, and glad to hear your facial hair is all there, I've learned from some guys on here that it can be really difficult to hide especially with darker hair. Is your white hair pretty much filling in the bald areas? mine has been weird as I have some really long ones, but shorter ones that I can feel but never seem to grow back in all the way??

Comment by Cokeman on January 22, 2012 at 10:53pm

Hey Christine. My ophiasis pattern alopecia has pretty much stalled. I was losing it quite rapidly for about 3 months but i have not had any loss for about 6 months now. I havent had any regrowth either but i guess no more loss is better than nothing! I still have patchy arms and legs and chest but my facial hair is all still there. I have enough hair around my head to comb down over the ophiasis pattern, but as you said, the wind is the enemy! I have the white hairs too around the perimeter of where i lost all my hair with ophiasis pattern. I am not sure though whether this is new hair or whether it is hair that was there and has turned white? Anyone shed any light on this one?

Comment by Tracey Holt on January 22, 2012 at 1:13pm

My spots filled in really quite quickly,and over the past 9 months my ophiasis pattern has also filled in. The front temples and across the front did it of their own accord, with a little bit of help from steroid shampoo and gel, and the back had a kick start with injections, but that was in July last yr, and it is still growing, snd working it's way down x

Comment by JeffreySF on January 21, 2012 at 7:51pm

My ophiasis pattern is pretty much filled in. waiting for the spots to do the same.

Comment by Christine on January 21, 2012 at 3:51pm

Hi, I see no new activity on this group, I actually thought I'd joined a long time ago, as this is my pattern of alopecia, I have had this pattern for about ten years now, and when I first heard of it I was so scared I was going to lose it all, but so far I have come close even to shaving but managed to tough it out and get through. It seems that everything I read on this particular pattern of AA is really negative, anyone else out there like me? Right now I'm experiencing some loss, and honestly its been years since my bottom part has grown back. I use Minoxidil and I think that this has really helped me, I feel that while it can not stop the hair from falling, it thickens up what hair I have and that really helps cover my vacant areas (and they are extensive) I dont have any,except that white hair all around my head, in the back I'd say half way up, it has been challenging to hide, but everyone says yould never know how much hair I dont have. my hair is so much more thicker now where I have hair that it's day and night different since the picture I have as my profile pic....I got to get a newer one up. I'm curious how all the other Ophiasis people are doing?? Instead of all the negative stuff out there about our pattern, I'd like to hear some hopeful news? The wind is still my enemy, but I got some pretty tough hairspray....lol Love to hear from anyone who is on this journey.

Comment by Susan Innes on August 11, 2011 at 11:10pm

YAY...I just found this group. This is the first time I've ever encountered anyone else diagnosed with ophiasis AU. While at the NAAF conferences through the years, no one has ever known what this was. The dermatologist was very pessimistic when he "labeled" the type of alopecia, saying it usually developed into AU. Was anyone else given this same prognosis from their doctor? Also, anyone else's genetic?

Comment by JeffreySF on July 6, 2011 at 9:16pm

My alopecia started out as patches and went to AU within a few months. After 3 years it returned as patchy with the Ophiasis pattern. It is slowly filling in....so far.

Comment by Cokeman on July 6, 2011 at 9:11pm

Hello, I have Ophiasis type alopecia, and am thinking about shaving my head because it is becoming nearly too hard to hide now. It has progressed slowly around my head from above my ears and at the back of my scalp and just slowly making its way in toward the top of my head. From what i can gather, i am kind of assuming that this is just going to progress into complete hair loss, so i may as well just beat it to the punch. I have also lost a lot of hair off my arms and legs, they are nearly bald now! Anyone else have similar circumstance?

Comment by liz on May 2, 2011 at 9:11pm

Hi- new here- my ten year old daughter just got diagnosed but we are going to a new doc as they think she is ophiasis. It is soooo hard to find info. If she is losing all around her head, a good 1 inch band starting on forehead all the way around, is this still ophiasis? Or is ophiasis only from ear to ear in the back?

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