Diagnosed in April of '08...lost hair EVERYWHERE and fast... universalis. I've always been all or nothing!
Currently I have all of my hair with some patches that I can fill in with hair fibers. Lots of exclamation point hairs which looks yuck. Hair growth slow to come in, but it's there!
thanks for your nice comments ive had alopecia universalis for three months and shaved my hair off after eight weeks as it was looking bad and feel much better for it, i draw my eyebrows on and everything else, so not bad really.....
hope your ok, ive just got home im on a tv show in england for alopecia sufferers so ill tell you all about it when i know more, hows the eyebrows going ?
haha frente rocks! my sister saw them at the big day out in melbourne in the early 90s when she was 18...she got to go back stage and hang out with angie hart the lead singer and the rest of the band and have a few drinks. i was only in like grade five then but i was stoked that my big sis got to hang out with frente!
Hi Samantha! I went to this place called Naturally Yours in Willowbrook on Rt 83 (Kingery Hwy). I really liked it. They are very nice and knowledgeable and it's very private there - they don't really let anyone in without an appointment. So when you go you're the only one there getting all the attention. ;)
Hi Sam! Really appreciate that you read my profile. I had AT a year ago. Now its AU. Still falling. Understand how you feel. I shaved my head last year but most of my friends cant take it so I buy myself a wig. Its totally different being an AU in Malaysia. How I wish I live in US, UK, Europe or anywhere where others don't mind bald women.
No I didn't hear about it. I have to work this Saturday so I doubt I'll be able to make it. Where in Oak Lawn and do you know what time? I'm hoping maybe they'll have another one that I can make. Glad to hear you were able to work with your own hair. And, congrats on the new brows. I'm sure they look great. That's an option I'm gonna let Becky decide on when she is older. You'll have to let me know who did yours so when the time comes I have a reference.
Hi Samantha! My hair fell out VERY VERY slowly. I first noticed it in August 98, and didn't get my first piece until the end of the year in 2000!! I was also lucky because my hair came out underneath first, so I was able to hide it for a long time too. I still have eye lashes, and hair all over my body, except most of my brows.
I see you're in Chicago...I just recently moved from there! I miss it. Will be visiting in October and can't wait!
Yeppo! Posted an update on the group discussion. I really wish we got notified in the activity at the top of the home page when new stuff is posted in our groups. That stinks! Anyway yeah I went. It was cool - I'm glad I went. Met Squonk from our group. LOL. We have 11 members now, so I'll try to get something together for us soon! This week is busy with holiday stuff and then I have a wedding the next week...but soon thereafter I'll get something together!!
My hair came out so slow that I never even actually noticed it falling out! It was like a spot would just appear. Brows were the same way...I first noticed the shape of my left brow was changing at the beginning of '05 and didn't have to get the tatoos until about a year ago. My hair was long before...really didn't look much different than it does now! :) I had a very small patch of regrowth on the top of my head about 3 yrs ago, but that's it. I don't ever go to the Dr or anything anymore. It just upsets me, when I'm never usually upset about it!
I lived in Lincoln Park for 2 yrs and just off Michigan & E. Chestnut for a year. Do you live in the city? I used to be a cocktail server at Rockit Bar & Grill for about a year in 2005. It was such a popular place, people often recognize me from there!! At least they used to....
I lived pretty close to you in Lincoln Park...at Clark & Fullerton...a couple doors down from Urban Outfitters. I definitely went to Weiners Circle a few times! We also used to often walk to the Golden Nugget up there all the time in the wee hours of the morning! LOL I moved here for a guy...didn't work out, of course! haha It's ok though...I like it here. I like moving around anyway....I do it A LOT!! :)
Hi Samantha,
Did you ever decide what to do with your eyebrows?
I just thought I would catch up with you and find out what you are doing lately.
LeslieAnn
Hi Samantha,
Thank for accepting my friend request. I'm in the chicago land area also going through kinda the same thing. Like I said in my profile I lost about 50% of my hair last year shaved my head started the shots and have had total regrowth. But now it's starting all over again I've lost some body hair and my eyebrows are thinning out. Not sure where its headed but glad to know there are other people out there that i can talk to about this crazy situation. ps if your curious of what i look like you can see a pic of what i used to look like on my myspace page just click on my website address.
jessica
Hey! It sounds like you're having fun, watching your hair grow, hooray!
Yes, the book is out. You can get it by clicking the link at the bottom of my page, or you can go to Amazon.com or the NAAF Marketplace!
Let me know how you like it!
LeslieAnn
Not sure if you got my last comment. Just wanted to say hello. Myself and a couple of other Chicago Alopecians are getting together next week if you want to join let me know we've settled on a day but not time or place so any ideas are welcome,
Hey Samantha, I keep trying to leave a comment but they aren't showing up not sure what I'm doing incorrect they wont post.
let me know if your have gotten any of them.
Ok I am a great big dork I'm so sorry about the over load of comments.
Well it sounds like your hair is on its way back in that's great.
I've been dealing with this for about year. About 5 months into my third pregnancy I noticed the hair line by my ear getting higher up I would run my hands through my hair in that spot and I would have about 40 hairs in my hand. By the time I gave birth I had what the doc's call the Ophiasis pattern it starts on one side of the head and goes all the way to the other. Like when we were kids, girls would shave their sides and underneath thats what it looked like what a great hair style right. So Dec. 6th I shaved it off and got a wig.
Guess I should have done it the other way around cause I ended up with a real hair wig and it looked nothing like I used too. So I started the steroid shots in November and had total regrowth by Jan. in April I got the last set of shots and the doc thought I went into remission so I stop getting the shots. Then in June I noticed a few spots they can be covered but now my eyebrows are thinning and my female hair is falling out guess that the up side is this little problem. lol So I've started getting the shots agian but I'm not sure how long I will continue its very hard to deal with it growing back then falling out again like you and so many others of us I would rather have all or nothing.
Where did you grow up? I went to Hinsdale South I was class of 96. Lived in Az for a while but Chicago Burbs forever. My best friend Michelle lives in the city Fullerton and Clark.
we are going to try for wed next week haven't picked a place or time so if you think you may be able to make it then we go closer by you so you don't have to travel so far.
Wow, Samantha, thanks for such a nice comment on my blog! You made my night! You are a beautiful girl and I definitely get a great sense of your bright spirit and that you have a really radiant personality. I look forward to getting to know you better!
By the way, I see that on May 23rd you were thinking about doing eyebrows and liner. Did you do it? I LOVE having my brows and liner done (especially now that my brows and lashes have grown back. who doesn't want to get out of the shower with their makeup done?!)
thanks, samantha. glad to hear you've got a lot of regrowth! i hope it stays! through all my stages i have still always had to shave my legs. lame, huh?
thanks also for your comment on my son's mohawk. i thought it was funny that somebody would write that and i also work as an interpreter for the courts and i've never seen a gangbanger with a mohawk. funny. i saw a girl on here that had a blue mohawk for awhile and i thought it was awesome! if i lost my hair in any type of pattern that would allow me to do that, i would so have a mohawk and dye it some cool color and spike it high while playing soccer especially!
HI SAM WELL, IM STILL THE SAME AT THE MOMENT, BUT IM COPING OK, IVE GOT EIGHT NEW WIGS AND IM HAVING FUN WITH THEM , SO ONWARDS AND UPWARDS AS THEY WOULD SAY.....
sam thanks for the lovely comment i have lost everything eyebrows and eyelashes too, still patchy on head though so keeping my fingers crosssed xx how are you x
hey how have you been?? yeah we got together but we do every 3rd thursday of the month.
Not doing to bad still losing hair but it's slowed down.
hey did you get your eyebrows done i need to let me know. I am coming down to the city on the 18th I'll let you know where we are going it's for a friends 30th.
well write me when you can
Hi Samantha! That is awesome to hear that running keeps your spirits strong, too :) My half-marathon went really well- it was in Lake Geneva, WI, so the scenery was unbelievably beautiful! We ran through woods and past horse pastures...just amazing! Hope that all is well and talk to you soon.
Cheers,
Natalie
aww thanks samantha. how is everything with you these days? got my eyebrows done and love them got a vacuum wig too. this going bald costs alot of money jeeze. well hope to chat again soon
have a great summer
jessica
Hey Samantha! yeah my hair is growing back! Crazy, huh? I just have a couple small spots that didn't grow, but no one can tell but me. :) Hope everything is going well with you!!
Hey Samantha!
Thanks so much for your lovely message!
We are just editing the documentary now and hope to have it out and for viewing in the next 6 months - I promise everyone on alopecia world will know when it is!!!
Until then sending you a big hug and I hope everything is going really well for you!!
G
xx
claire
Jun 13, 2008
jennifer
Jun 13, 2008
claire
Jun 14, 2008
claire
Jun 14, 2008
claire
Jun 16, 2008
Jennifer
Jun 16, 2008
Mandy
Jun 17, 2008
Nicole
Jun 17, 2008
3mee
Jun 18, 2008
3mee
Jun 18, 2008
Nicole
Jun 18, 2008
3mee
Jun 19, 2008
Christina (Mom of Becky)
Jun 26, 2008
Ashley
I see you're in Chicago...I just recently moved from there! I miss it. Will be visiting in October and can't wait!
Jun 30, 2008
Mandy
Hugs,
Mandy
Jun 30, 2008
Roger
Whats the name of the singer you have here?
Rog
Jul 1, 2008
Roger
Its a REALLY good song. By the way....I think im going to Chicago in september/october. Looks like a cool place.
Roger.
Jul 1, 2008
Roger
Jul 1, 2008
Roger
Jul 1, 2008
Ashley
I lived in Lincoln Park for 2 yrs and just off Michigan & E. Chestnut for a year. Do you live in the city? I used to be a cocktail server at Rockit Bar & Grill for about a year in 2005. It was such a popular place, people often recognize me from there!! At least they used to....
Jul 3, 2008
Ashley
Jul 3, 2008
Mandy
Jul 10, 2008
Mandy
Jul 15, 2008
claire
Jul 19, 2008
claire
Jul 19, 2008
LeslieAnn Butler
Did you ever decide what to do with your eyebrows?
I just thought I would catch up with you and find out what you are doing lately.
LeslieAnn
Jul 20, 2008
Hugh Mclellan
Jul 23, 2008
Jessica
Thank for accepting my friend request. I'm in the chicago land area also going through kinda the same thing. Like I said in my profile I lost about 50% of my hair last year shaved my head started the shots and have had total regrowth. But now it's starting all over again I've lost some body hair and my eyebrows are thinning out. Not sure where its headed but glad to know there are other people out there that i can talk to about this crazy situation. ps if your curious of what i look like you can see a pic of what i used to look like on my myspace page just click on my website address.
jessica
Jul 24, 2008
LeslieAnn Butler
Yes, the book is out. You can get it by clicking the link at the bottom of my page, or you can go to Amazon.com or the NAAF Marketplace!
Let me know how you like it!
LeslieAnn
Jul 24, 2008
Jessica
Not sure if you got my last comment. Just wanted to say hello. Myself and a couple of other Chicago Alopecians are getting together next week if you want to join let me know we've settled on a day but not time or place so any ideas are welcome,
Jessica
Jul 25, 2008
Jessica
let me know if your have gotten any of them.
jessica
Jul 25, 2008
Jessica
Jul 25, 2008
Jessica
Ok I am a great big dork I'm so sorry about the over load of comments.
Well it sounds like your hair is on its way back in that's great.
I've been dealing with this for about year. About 5 months into my third pregnancy I noticed the hair line by my ear getting higher up I would run my hands through my hair in that spot and I would have about 40 hairs in my hand. By the time I gave birth I had what the doc's call the Ophiasis pattern it starts on one side of the head and goes all the way to the other. Like when we were kids, girls would shave their sides and underneath thats what it looked like what a great hair style right. So Dec. 6th I shaved it off and got a wig.
Guess I should have done it the other way around cause I ended up with a real hair wig and it looked nothing like I used too. So I started the steroid shots in November and had total regrowth by Jan. in April I got the last set of shots and the doc thought I went into remission so I stop getting the shots. Then in June I noticed a few spots they can be covered but now my eyebrows are thinning and my female hair is falling out guess that the up side is this little problem. lol So I've started getting the shots agian but I'm not sure how long I will continue its very hard to deal with it growing back then falling out again like you and so many others of us I would rather have all or nothing.
Where did you grow up? I went to Hinsdale South I was class of 96. Lived in Az for a while but Chicago Burbs forever. My best friend Michelle lives in the city Fullerton and Clark.
we are going to try for wed next week haven't picked a place or time so if you think you may be able to make it then we go closer by you so you don't have to travel so far.
Jessica
Jul 25, 2008
Shannon
By the way, I see that on May 23rd you were thinking about doing eyebrows and liner. Did you do it? I LOVE having my brows and liner done (especially now that my brows and lashes have grown back. who doesn't want to get out of the shower with their makeup done?!)
Jul 26, 2008
Shannon
thanks also for your comment on my son's mohawk. i thought it was funny that somebody would write that and i also work as an interpreter for the courts and i've never seen a gangbanger with a mohawk. funny. i saw a girl on here that had a blue mohawk for awhile and i thought it was awesome! if i lost my hair in any type of pattern that would allow me to do that, i would so have a mohawk and dye it some cool color and spike it high while playing soccer especially!
Jul 27, 2008
claire
Jul 30, 2008
claire
Oct 2, 2008
claire
Oct 18, 2008
claire
Nov 29, 2008
claire
Jan 16, 2009
claire
Feb 22, 2009
Jessica
Not doing to bad still losing hair but it's slowed down.
hey did you get your eyebrows done i need to let me know. I am coming down to the city on the 18th I'll let you know where we are going it's for a friends 30th.
well write me when you can
jessica
Apr 6, 2009
Stephanie
Apr 20, 2009
Natalie
Cheers,
Natalie
Jun 25, 2009
Jessica
have a great summer
jessica
Jun 25, 2009
Jessica
Jun 25, 2009
Karina
Jul 6, 2009
Mandy
Jul 6, 2009
Georgia Van C
Thanks so much for your lovely message!
We are just editing the documentary now and hope to have it out and for viewing in the next 6 months - I promise everyone on alopecia world will know when it is!!!
Until then sending you a big hug and I hope everything is going really well for you!!
G
xx
Aug 1, 2009
Georgia Van C
Aug 12, 2009