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Comment by Kristy on July 8, 2012 at 7:37am

Hi All, I am sad to say that I have full blown universalis; have been hairless now for almost two years, but I started out with the Ophiasis pattern. My alopecia began about 8 months after the birth of my first child, in 2009. Just curious to know if anyone else here experienced something similar. I did have regrowth initially with prednisone, but after a miscarriage it all began to fall out again, making me think that this has to have something to do with hormones. The kenalog/cortisone injections did not work for me, just gave me craters in my head. I gave up doing any sort of treatment as I got pregnant again. As far as diet goes, i've seen a lot of gluten free people on here, but I was gluten free before this hit me so I am not sure how much diet has to do with it, but gluten/dairy do cause inflammation so it might be better for us not to have much of them in our diets, Can cause our immune system to go into overdrive.

Comment by Lexi on July 7, 2012 at 7:40pm

Welcome to all the new people on my site. I have tried to send a friends request to Allison, because she is practically a neighbor of mine !!!

Comment by Susan Innes on June 22, 2012 at 9:27am

Corrine - I'm posting your longer message here. Most of us have difficulties with computers and especially when we are in an emotional state and lacking confidence. Ophiasis is a tough diagnosis per my first dermatologist who claimed it was the most severe; he offered the cortisone shots, however, I declined. As you read more posts, you'll see that some have changed diets and had success.

"From Corrine - Hi all, I am so happy to have found you all but it is not without great sadness.. The good thing is I have finally found exactly the type of alopecia I have.. The bad thing is...I have finally found out the exact alopecia I have and it's prognosis is devasting.. I'm still in shock and don't know where to go from here. My hairloss started at the end on march and has since progressed so rapidly. Over both ears high up all across the back of my head half way up my scalp and I also have a three inch by three inch patch on the top right Sid of my scalp.its all happening so quickly I can't even breath sometimes. I'm just so sucked that after seeing three deems I am the one to diagnos this, not them. When I saw pictures of this type of alopecia I was so happy as they all looked exactly like me. But at the same time I am still having a hard time accepting the prognosis. Has anyone here changed there diet after being diagnosed? And if so how. I started the paleo wholesome raw food diet about a month ago and I feel it has definitely helped me in many ways. I'd be interested to hear your feedback. Much love to all- corinne"

Comment by Corinne on June 22, 2012 at 8:16am

Iim so bad with computers I just meant to comment on here and I think I did it wrong somehow and sent the message privately :/ ohh well sry.. Hopefully I'll figure out how to domthis

Comment by Lexi on June 15, 2012 at 8:24pm

My shedding has started again the past month. My pattern seems to be getting higher all the way around. I still have the straggly thin pieces to cover the back, but allover it is just so thin. I think a wig every day will be in my very near future. I hope not, but I see it coming on. It is so hot here in FL I can't imagine wearing a wig every day, all day.

Comment by Christine on June 6, 2012 at 1:52am

Hey Cokeman, thanks for the pics, my pattern is much larger around and farther up than yours, but I get the same ring around sometimes when I lose in spots up higher. I can't really see the whities, mine are not shaved tho, so that may be why, some of my white hairs are as long as the rest of my hair, and sometimes I cut them shorter cause they can stick out underneath and look weird, especially behind the ears sometimes. I have actually comletely filled in over the last ten years I've had this, once in the last five or so I did get all my back hair to come in normal, I'm holding on to that hope. I can't really remember if I had as much white ones before that tho?? I'm beginging to wonder if once the white ones take over if they can ever be replaced by normal hair, Does anyone know? Thanks for sharing.

Comment by buffon85 on June 3, 2012 at 11:15pm

hi! my boyfriend has ophiasis pattern and some patches here and there. he shaved his head a month ago,it was a very difficult decision he had to take but now he feels better. he also lost all his body hair when he was 15 but he enjoys having smooth skin.
i hope you are all doing well. i am sorry for talking on behalf of him but i really like communicating with people that are experiencing the same situation so that i can understand what he is going through.

Comment by Cokeman on June 3, 2012 at 7:51pm

Its funny how at the back of my head in between the bottom of my hairline and the new patches, that the hair is really extra thick and also darker than the rest of my head.

Comment by Cokeman on June 3, 2012 at 7:50pm

Sorry the pics are so big! Dont know how to make them small..

Comment by Cokeman on June 3, 2012 at 7:49pm

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