As I have told some of you, I, just this week, finally found a name for the hair loss that I have, and finally also found some names and faces to go along with it as well as my own. Just when you think you are the ONLY one, you realize, yes, this is a big world, and surely someone else has the same thing. Oh, sure, I also have female pattern hairloss, but the issue I didn't have any information on was the ophiasis pattern....I at least know now I am not alone in this.
5.Ophiasis type of alopecia areata shows a band like hair loss. It occurs mostly in the temporal or the occipital regions of the scalp and is therefore more difficult to treat, as most medicines have a delayed action on these areas. Ophiasis type of alopecia is identified by a turban or snake like pattern on the periphery of the scalp. Ophiasis in Greek means serpent and this is how the disease gets its name.
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?
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?
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.
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?
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.
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
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?
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??
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.
Hey I wonder If people can see through the back part of my hair, it makes me feel so insecure, when I've lost too much it feels like the upper hair is away from my head a bit, and I hate it, I'll get the hebejebees when I'm sitting with my back to people, which is everyday at work. Lexi, don't worry too much about the same "do" you must have pretty long hair, mine is kept short, because when it was longer it was looking pretty thin on the ends, cutting it helped with that. most with shorter hair do wear it the same, Do any of the coworkers know about your alopecia? most people I know I've told including coworkers, I guess I came so close sometimes to wearing a wig, I knew they would know when I showed up with different hair one day. Still doesn't make it easy. Have you gotten or worn a wig in past?
Hey Christine, I can't keep mine short, no hair on the nape and around my ears. I hate it when the girls I work with are always changing their hair or talking about it. I wonder if they wonder why my hair is always the same. It is straggly being a bit longer, but I don't know what else to do with it. I wish I had the guts to wear a wig to work. I have plenty of them, and they make me feel better about myself, but several are very "catty" types, and I am sure they would have a field day. I just can't go there.
Hi Christine. Yes i think you are right, the white hairs definitely werent there previously. I have quite a few white hairs now above my ears, where it was completely bald a few months ago. Very strange.. Not sure that the white hairs are anything to celebrate though, they are few and far between and they stand out alot in amongst my brown normal hair! Wondering if the area will eventually fill in with white hair or whether that white hair will ever have colour again? I guess these are just part of the mystery of Alopecia! Lexi, i do feel for you and Christine, as it must be alot harder for girls with this problem. Anyways, keep your chin up!
Hi Lexi, I know how self conscious you can feel. I don't have much hair all around too, mostly the weird white hairs on the parameter I found someone who does a great job of cutting my hair, I've been using the minoxidil and continue to, it deffinately makes a big difference as far as the thickness of my remaining hair, my profile pic I was at my worse, that was a vit too short for me, I'm wearing it in a long tapered bob, I use a big round brush to blow it dry, I've found products that help too, the nioxin reflexives thickening spray works really well, it has little fibers I notice when I spray it on, Avon has a mark product called root lifter it's a liquid spray too, are you using minoxidil ? In a more serious note, not knowing you situation with working, is there any reasonable way for you to look for a job elsewhere? In our current economy I can understand where that may not always be an option, if your like me, my choices are limited, I work in the healthcare field, but I've often thought that work is the hardest as far as starting to wear a wig, it would be so much easier if you could just start with family and church and friends, there is no way people at work will not know that your wearing a wig, and it doesn't sound like you are working with mature compassionate people. Have you tried opening up to them about other things, not to personal but sensitive to know how they will react? I'm sorry that things are so difficult for you now. Right now I'm having a bad falling out spell, and always fear when it will end, always scared it won't. Hang in there.
Hi Cokeman, the white hairs are so strange, I started coloring my hair after the alopecia go real bad, I was a blond and my hairdresser felt that rather than highlighting the blond, we should take my hair darker, well this is the really strange part, it won't take color!! at first it seems to be colored darker, but when it's rinsed out it comes, like the hair itself is so different from other hair, I have alot of white hairs in the lost areas, they never quite completely fill in, but sometimes i have tons of short ones, I would rather have them then no hair, right now I'm losing hair, and I can feel the super smooth spots all over my lower parts especially the back. I'm feeling a bit down right now, but hoping this will stop soon, and I'll begin the grow in again:)
Just wanted to say that my first dermatologist while evaluating the hair loss was not hopeful of a good outcome, almost confirming eventual universalis. One hairdresser was pleased when she saw the small white hairs but like your results Christine, the white hair would not accept a dye. The normal hair continued to recede in a circular pattern around the scalp with little white hairs replacing them; but these white areas became thinner, eventually resulting in smooth bald areas (nape of neck, extending over ears and into the temple area). I then started to wear wigs and shaved the remaining hair. (This dermatologist had said that ophiasis was the most severe type of alopecia and almost always resulted in complete hair loss; but, I've never confirmed this theory with other dermatologists.)
Nice, Susan. so reassuring to know it was deemed the most severe and would result in total hair loss. That depresses me to no end. It has been since April 2008 when I started to shed, that summer I was shedding all over everyplace. Then late fall, it took a rest, and the shedding stopped. About 6 months later, started up again. Now, I don't shed, but it is just over all thin. And of course the nape and around my ears is smooth. Gotta love it, right?
Your situation may be a bit different, Lexi. From the time the bald area appeared at the nape of the neck and in the temples to the period of 90% loss, it took less than a year. (My 2 uncles with the disease had lost everything in 6 months with no regrowth.)
Then, there are the other people who have a full head of hair a few years later; we may not hear from them. I think there's always hope for 5-6 years after the loss. Supposedly, if it's been longer than that, the chances of anything but a bald head are pretty slim.
Small update for you guys. My ophiasis pretty much went dormant for the last 8-9 months and i stopped losing hair on my head. Quite a bit of fine regrowth, all completely white and more annoying becauise the white hairs stick out from under the coloured hairs and you have this perimeter of white. Kept losing hair on my legs though, they are nearly bald! Anyway, it was fine becasue i could still hide my bald spots.
Anyway, in the last 3 weeks i had some patches appear on the back of my head. These patches became very hard to hide in quite a short time, and so i made the decision yesterday to shave my hair off. I understand that as a guy, this decision is a lot easier to make, and i feel for you ladies because it must be a LOT harder.
Anyway, i will keep you updated as to the loss, and i'll post some photos of my cranium so you can see my pattern. Hope everyones holding up ok!
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.
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.
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.
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.
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
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"
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.
Hi Kristy! I just want to share my thoughts on your post. I have the Ophiasis pattern but never knew it had a name until a month ago when I stumbled upon it on the internet. I'm constantly researching and conducting experiments like a mad scientist! lol I also have bald patches scattered. I have been on various dosages of prednisone for 5 years and have had monthly cortisone injections. No real success. Not sure why I even continue with the prednisone. At my next dermatologist appt, I think I'm going to have her wean me off. (I've been researching various natural oils for treatment) My dermatologist always asks me what's going on in my life when my conditions worsens and each time I've had severe hair loss, it's been a stressful event for me. In 2007, I was in an intense Masters program which caused hair loss that was so severe, I could no longer cover it with my hair. I wore wigs for 3 months. With treatment and dropping out of the program, my hair grew back. Last year I had a hysterectomy and a breakup. 3 months later, the Ophiasis pattern developed with other patches and I lost eyebrows and lashes. The surgery was in March 2011 and the break up was May 2011. I was terribly worried about the surgery in February. My doctor told me that hair loss occurs about 3 months after the event. Based upon my research, it sounds as if stress and hormonal changes trigger Alopecia for me. It sounds as if your condition is sparked by stress as well. Now work is stressing me out! I see white hairs growing above my ears, just a tad bit. In the past, I was using lavender oils, drinking more water, diet and exercise to relax. The routine made me feel really good and my hair loss stopped. I think the stress of losing my hair is the stressful event. I just need to get back on my routine and hopefully my hair will regrow. I want to try yoga and also acupuncture as a method too since I read that both are good for stress. I've also tried scalp massages to circulate the blood to the scalp, still a work in progress......
Hello all! I never knew that pattern was called Ophiasis until reading this post. All I knew is that I was diagnosed 20 years ago with Alopecia Areata.
Lexi
Mar 11, 2011
Tracey Holt
Apr 23, 2011
Lexi
Apr 24, 2011
Lexi
Apr 24, 2011
Lexi
I found some more interesting reading sites
Apr 24, 2011
liz
May 2, 2011
Cokeman
Jul 6, 2011
JeffreySF
Jul 6, 2011
Susan Innes
Aug 11, 2011
Christine
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.
Jan 21, 2012
JeffreySF
My ophiasis pattern is pretty much filled in. waiting for the spots to do the same.
Jan 21, 2012
Tracey Holt
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
Jan 22, 2012
Cokeman
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?
Jan 22, 2012
Christine
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??
Jan 24, 2012
Lexi
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.
Jan 29, 2012
Christine
Hey I wonder If people can see through the back part of my hair, it makes me feel so insecure, when I've lost too much it feels like the upper hair is away from my head a bit, and I hate it, I'll get the hebejebees when I'm sitting with my back to people, which is everyday at work. Lexi, don't worry too much about the same "do" you must have pretty long hair, mine is kept short, because when it was longer it was looking pretty thin on the ends, cutting it helped with that. most with shorter hair do wear it the same, Do any of the coworkers know about your alopecia? most people I know I've told including coworkers, I guess I came so close sometimes to wearing a wig, I knew they would know when I showed up with different hair one day. Still doesn't make it easy. Have you gotten or worn a wig in past?
Jan 30, 2012
Lexi
Hey Christine, I can't keep mine short, no hair on the nape and around my ears. I hate it when the girls I work with are always changing their hair or talking about it. I wonder if they wonder why my hair is always the same. It is straggly being a bit longer, but I don't know what else to do with it. I wish I had the guts to wear a wig to work. I have plenty of them, and they make me feel better about myself, but several are very "catty" types, and I am sure they would have a field day. I just can't go there.
Feb 11, 2012
Cokeman
Hi Christine. Yes i think you are right, the white hairs definitely werent there previously. I have quite a few white hairs now above my ears, where it was completely bald a few months ago. Very strange.. Not sure that the white hairs are anything to celebrate though, they are few and far between and they stand out alot in amongst my brown normal hair! Wondering if the area will eventually fill in with white hair or whether that white hair will ever have colour again? I guess these are just part of the mystery of Alopecia! Lexi, i do feel for you and Christine, as it must be alot harder for girls with this problem. Anyways, keep your chin up!
Feb 12, 2012
Christine
Feb 12, 2012
Christine
Hi Cokeman, the white hairs are so strange, I started coloring my hair after the alopecia go real bad, I was a blond and my hairdresser felt that rather than highlighting the blond, we should take my hair darker, well this is the really strange part, it won't take color!! at first it seems to be colored darker, but when it's rinsed out it comes, like the hair itself is so different from other hair, I have alot of white hairs in the lost areas, they never quite completely fill in, but sometimes i have tons of short ones, I would rather have them then no hair, right now I'm losing hair, and I can feel the super smooth spots all over my lower parts especially the back. I'm feeling a bit down right now, but hoping this will stop soon, and I'll begin the grow in again:)
Feb 13, 2012
Susan Innes
Just wanted to say that my first dermatologist while evaluating the hair loss was not hopeful of a good outcome, almost confirming eventual universalis. One hairdresser was pleased when she saw the small white hairs but like your results Christine, the white hair would not accept a dye. The normal hair continued to recede in a circular pattern around the scalp with little white hairs replacing them; but these white areas became thinner, eventually resulting in smooth bald areas (nape of neck, extending over ears and into the temple area). I then started to wear wigs and shaved the remaining hair. (This dermatologist had said that ophiasis was the most severe type of alopecia and almost always resulted in complete hair loss; but, I've never confirmed this theory with other dermatologists.)
Feb 13, 2012
Lexi
Nice, Susan. so reassuring to know it was deemed the most severe and would result in total hair loss. That depresses me to no end. It has been since April 2008 when I started to shed, that summer I was shedding all over everyplace. Then late fall, it took a rest, and the shedding stopped. About 6 months later, started up again. Now, I don't shed, but it is just over all thin. And of course the nape and around my ears is smooth. Gotta love it, right?
Feb 18, 2012
Susan Innes
Your situation may be a bit different, Lexi. From the time the bald area appeared at the nape of the neck and in the temples to the period of 90% loss, it took less than a year. (My 2 uncles with the disease had lost everything in 6 months with no regrowth.)
Then, there are the other people who have a full head of hair a few years later; we may not hear from them. I think there's always hope for 5-6 years after the loss. Supposedly, if it's been longer than that, the chances of anything but a bald head are pretty slim.
Yeah, it's a great rollercoaster ride:).
Feb 18, 2012
Cokeman
Small update for you guys. My ophiasis pretty much went dormant for the last 8-9 months and i stopped losing hair on my head. Quite a bit of fine regrowth, all completely white and more annoying becauise the white hairs stick out from under the coloured hairs and you have this perimeter of white. Kept losing hair on my legs though, they are nearly bald! Anyway, it was fine becasue i could still hide my bald spots.
Anyway, in the last 3 weeks i had some patches appear on the back of my head. These patches became very hard to hide in quite a short time, and so i made the decision yesterday to shave my hair off. I understand that as a guy, this decision is a lot easier to make, and i feel for you ladies because it must be a LOT harder.
Anyway, i will keep you updated as to the loss, and i'll post some photos of my cranium so you can see my pattern. Hope everyones holding up ok!
Jun 3, 2012
Cokeman
Jun 3, 2012
Cokeman
Jun 3, 2012
Cokeman
Sorry the pics are so big! Dont know how to make them small..
Jun 3, 2012
Cokeman
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.
Jun 3, 2012
buffon85
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.
Jun 3, 2012
Christine
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.
Jun 6, 2012
Lexi
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.
Jun 15, 2012
Corinne
Jun 22, 2012
Susan Innes
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"
Jun 22, 2012
Lexi
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 !!!
Jul 7, 2012
Kristy
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.
Jul 8, 2012
Allison
Hi Kristy! I just want to share my thoughts on your post. I have the Ophiasis pattern but never knew it had a name until a month ago when I stumbled upon it on the internet. I'm constantly researching and conducting experiments like a mad scientist! lol I also have bald patches scattered. I have been on various dosages of prednisone for 5 years and have had monthly cortisone injections. No real success. Not sure why I even continue with the prednisone. At my next dermatologist appt, I think I'm going to have her wean me off. (I've been researching various natural oils for treatment) My dermatologist always asks me what's going on in my life when my conditions worsens and each time I've had severe hair loss, it's been a stressful event for me. In 2007, I was in an intense Masters program which caused hair loss that was so severe, I could no longer cover it with my hair. I wore wigs for 3 months. With treatment and dropping out of the program, my hair grew back. Last year I had a hysterectomy and a breakup. 3 months later, the Ophiasis pattern developed with other patches and I lost eyebrows and lashes. The surgery was in March 2011 and the break up was May 2011. I was terribly worried about the surgery in February. My doctor told me that hair loss occurs about 3 months after the event. Based upon my research, it sounds as if stress and hormonal changes trigger Alopecia for me. It sounds as if your condition is sparked by stress as well. Now work is stressing me out! I see white hairs growing above my ears, just a tad bit. In the past, I was using lavender oils, drinking more water, diet and exercise to relax. The routine made me feel really good and my hair loss stopped. I think the stress of losing my hair is the stressful event. I just need to get back on my routine and hopefully my hair will regrow. I want to try yoga and also acupuncture as a method too since I read that both are good for stress. I've also tried scalp massages to circulate the blood to the scalp, still a work in progress......
Jul 8, 2012
prairie9
Hello all! I never knew that pattern was called Ophiasis until reading this post. All I knew is that I was diagnosed 20 years ago with Alopecia Areata.
Jul 8, 2012