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One month (+ 7 days) since diagnosis

I just wanted to put up some more recent pictures of my head. As you can see, there isn't much left to my eyebrows or eyelashes. It has been a little over one month since we noticed the first small spots in the back and was diagnosed. Holy cow...this thing has moved quickly. I'm home now, back in Chicago, for some time until Galveston is back up and running since the hurricane. I have an appointment with my dermatologist here this week as a second opinion. I also am going to meet with a woman… Continue

Added by Rachel on September 23, 2008 at 2:06pm — 4 Comments

Committee needed for event in Delaware!

Hi everyone!



After attending the NAAF conference I was completely energized and excited to host an event for AA in Delaware... Finally!! I am thinking of holding a 5k run/walk at the Community Service Center that I now work for in Clayton, DE. It is absolutely beautiful with a river, and trees surrounding the walking trail.



I am wondering if there is anyone in the tri-state area or within reasonable distance that would be interested in being on the committee of this event.… Continue

Added by Kayla on September 23, 2008 at 1:30pm — 4 Comments

National AA Registry - Stage II

Back from the derm a little while ago. He basically said there wasn’t much he could do based upon the extent and the continued progression. No news there. The reason for the visit was completion of the documentation including the blood draw for the National AA Registry (NAAR). The doc wasn’t familiar with the registry or the requirements but everyone in the office (Dermatology Associates of Rochester) get a gold star in my book for effort. They asked to hold onto the paperwork, and let me tell… Continue

Added by Tony on September 23, 2008 at 12:09pm — 2 Comments

Conference in Europe?

Hi all.

At my first NAAF conference in USA this summer I was very impressed with NAAF and how they handled the conference.

I talked to a friend here in Sweden about it and I suggest to have a similar conference here in Europe for us europeans. I know its a lot work behind making it real.

What are you people from Europe think about that idea? Good or bad?

Roger.

Added by Roger on September 23, 2008 at 10:13am — 2 Comments

Alopecia on Entourage

I was catching up on my Tivo's episodes of Entourgare (I know...not the most enlightened show) but they mentioned Alopecia twice in one episode. Not really anything about it but just that someone had it which I found strange unless they were obvioulsy trying to bring attention to it. It is awareness month...I was wondering if someone that works on or with the show is affected? I haven't been on this site in a while...Was there any mention of it here? Let me know if you heard… Continue

Added by Laura Duksta on September 22, 2008 at 4:36pm — 3 Comments

To the adults who have grown up with Alopecia

I haven't posted in a while but last night a topic that has been on the back of my mine have resurfaced again and I wanted to post this blog in order to get advice from all the people who have grown up with alopecia.



I guess the main question in a parent's mind in regards to their children having alopecia is, "what the future holds for them?" and what we as parents can do to make it better.

I realised that growing up with alopecia now is a lot different from growing up with… Continue

Added by Karen on September 21, 2008 at 9:23pm — 3 Comments

Hope!!!

I just need to share with someone, so I picked everyone :) I took my son to the doc yesterday ready to tell her we were ready to take a break from the treatment as he has had such significant loss, especially in the last week. He had lost 70% in about 2 month since it started and the last to go is the top. He lost about 1/4 of the top in the last week. IKES!!! We have been using a steriod ointment that leaves his hair so oily he has to wear a hat even though he really doesn't want to. Anyway,… Continue

Added by Margie on September 21, 2008 at 12:34am — 3 Comments

Another Day..

I havent written a blog on here for awhile. Not much had gone on, until now.

In one of my other blogs, I had mentioned that I was going through a mild chemo for Molar Pregnancy.

Well, the treatments havent been working..So Im going on a stronger chemo, one thats going to make me sick, and tired, and yup..lose my hair. Im so scared. There's a few complications with this treatment that terrify me.

I also wonder how this is going to affect my alopecia. What if after it all falls… Continue

Added by Chelsea McGee on September 20, 2008 at 1:19pm — 3 Comments

as anyone tried thymus king

I found this website, and i was wondering if anyone has ever tried it? please let me know

www.ThymusKing.com


Thanks

Kami

Added by Kami on September 19, 2008 at 11:57am — 1 Comment

Need info on Central Certifugal scaring alopecia

Hi Everyone! I just discovered that a friend of mine was recently diagnosed with central certifugal (sp?) scaring alopecia. I recommended this site to her, but she is not ready to join. While I know about AA I don't really know much about this form of alopecia. I would really appreciate any info that I could relate back to her. Especially about treatment options. She is going to a Dr. that I thought didn't treat my AA very aggressively and quite going to. I would also appreciate any suggestions… Continue

Added by Carrie on September 17, 2008 at 10:24pm — 1 Comment

A little advice please

Ok so Ive had AA my entire life(im 15) and never went completly bald. Now im getting really close to being bald but it still looks like i have not a lot of hair but enough so i look semi "normal" when I wear a beanie. So I was wondering when other people decided to shave their head and if it was difficult or something like that and I have been considering it for a while but im really indesieve so if you guys could give me your opion and or some advice that would be awsome.

Added by lauren on September 17, 2008 at 9:29pm — 8 Comments

My Creed

Reading the pain and suffering of treatments that people go through. It boggles my mind....And my heart goes out to those dealing with the realization of the envitable. Once the dr. informed me that my body was attacking my hair follicles and not letting my hair grow. And that he could give me shots in my head! Just so I could have eyelashes and eyebrows !...I said are ya kiddin'?..I can draw them on!.... My family had the hardest time with it. My mom bought me a wig cause I was poor, married… Continue

Added by Lorena on September 17, 2008 at 2:25am — 4 Comments

I didn't even recognize you...

Well I’ve decided to try and be a little more frequent and shorter with my posts…



First let me just apologize for everyone that’s left me comments. I haven’t had the chance to reply because I’ve been so busy, but I have read every comment and I appreciate it. And I also hope everyone is doing well.



I’m sick of people saying that they didn’t recognize me at first because of my bald head. Does hair really change you that much??? It seems like everyone I run into that I… Continue

Added by Drew on September 17, 2008 at 12:00am — 1 Comment

Kind of sad life is returning to normal after Hurricane Ike

This may sound crazy, but I'm kind of sad life is returning to normal after the hurricane that just hit Houston. Please don't get me wrong, I wouldn't wish this devastation on my worst enemy! But for me, once the hurricane was over and we were on survival mode for several days, it was a nice diversion from my consuming thoughts about hair loss. I liked not having power as I couldn't see my receding hairline in the mirror. I liked having an excuse to 'not look your best' every day. We were too… Continue

Added by Laurie on September 16, 2008 at 9:58pm — 1 Comment

Stress

I hear so much about stress being a major factor in alopecia. I've heard alot that it was probably a stressful event that set off my son's alopecia. I've talked with him and we can't come up with anything. Anybody have any thoughts on how stress factors in on the developement or continuation of alopecia?

Added by Margie on September 16, 2008 at 8:02pm — 10 Comments

My Hair Club Experience

Today, I just went to the Hair Club. The lady said that she never had a customer with so much hair. Well, they started to put the system on. I asked if they could use maybe the tape, just in case I didn't like it, it could be easily taken off. Well she pulled up my hair and glued the system on the perimeter of my head. It felt like this tape was pulling my hair out. She started to pull my hair through this system and OUCH!! It kept getting tangled and it felt like my hair was being pulled out.… Continue

Added by Dawn on September 16, 2008 at 7:40pm — 3 Comments

My recent silence

Hey guys - I just wanted to explain why I haven't been on here lately. I live in Galveston, TX and evacuated last Thursday from the island. I am staying with friends elsewhere in Texas. We are safe (me, the boyfriend, and the two puppies). I am heading home to hang out with my family in Chicago for a few weeks because they are calling for the island to be shut down for a few more weeks. Ike actually made landfall on the island, so it is a mess down there. Just wanted to let you know. I'm… Continue

Added by Rachel on September 16, 2008 at 5:53pm — 2 Comments

Photos on Flickr.

Hi all.

I just found an great alopecia group on Flickr to join. Lots of photos with/of alopecians as ourselfs.

http://www.flickr.com/groups/alopecia/

Take care everyone.

Roger.

Added by Roger on September 16, 2008 at 12:12pm — 4 Comments

getting onion juice tomorrow

Tomorrow im going to start to buy onion juice, for anyone who would like to know. I will start it on my son wednesday and we will go from there. I will keep everyone updated weekly to let you know how it is going, thanks

Added by Kami on September 16, 2008 at 12:30am — 8 Comments

Dotty's Alopecia Awareness Article in the Sunday, September 14th edition of the New Hampshire Union Leader

Photobucket

Added by Dotty on September 15, 2008 at 10:57pm — 7 Comments

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