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Mother’s Day Massacre

I figured that sounded like a good term for this story. So mother’s day became a double holiday for my mother as it was also her birthday this year. So when Sunday came we went out to a very nice restaurant which is very popular especially on holidays.



From the start my mother could tell I was uncomfortable. For the last couple weeks I have worn my Atlanta Braves hat backwards pretty much everywhere. Since this was a nice restaurant I wasn’t going to try to wear my hat however. I… Continue

Added by Drew on May 16, 2008 at 8:39pm — 5 Comments

Hope and optimism are powerful teammates

Hi everyone, I should clarify what I wrote in my previous blog. I got way ahead of myself and skipped over details that I feel it is only right to share with you. The Alopecia Registry is not directly researching for a cure. They are only data collecting at this point. I feel, however, that without participation, no progress can be made in our cause. And that progress can possibly lead to a cure.



I spoke with my rep at MD Anderson today. She stated that answers I provide on their… Continue

Added by Kelly on May 16, 2008 at 3:23pm — No Comments

An epiphany

Epiphany - the sudden realization or comprehension of the essence or meaning of something.



I did some web surfing last night, trying to get a handle on both my emotions and the reality of alopecia. Somewhere between the dark and the light I had an epiphany. I can choose to wallow in self pity, wasting hours, days, even years which are then gone forever. Or, I can take the bull by the horns and live with passion, regardless of the opportunities, even those disguised as obstacles,… Continue

Added by Tony on May 16, 2008 at 12:02pm — 3 Comments

Growing up with AA!

I was diagnosed with AA when I was 5. I grew up in a private school from kindergarten to 8th grade, It was a small school, my 8th grade graduating class was 6 people! lol We'll when I was in kindergarten, my mom was blow drying my hair and saw a spot on the back of my head. After that I think I lost probablly 40-50% of my hair. My Aunt took me to the doctor, my mom was always working. I love my Aunt by the way! The doctor said I was going to loose all of it. My teacher stood me in front of the… Continue

Added by Jennifer on May 16, 2008 at 11:25am — 6 Comments

The past 8 months...My story so far

So much of my life has changed within the last 8 months I don't even know where to begin. This may just be a way for me to vent but if anyone takes the time to read this kudos to you, and if you leave me some tips of feedback, it is greatly appreciated. I don't even know if anyone will read this.



I guess it all started at the end of last summer. I had just been hired to coach soccer at my old high school/middle school and was really excited. I have played soccer since I was 5 and… Continue

Added by Drew on May 16, 2008 at 2:41am — 4 Comments

My experience with AA thusfar...

My hair first started falling out the week of April 28th, 2008. I had my first doctor visit on May 2nd and received my first round of steroid injections. It is now May 15th and my hair just keeps falling out. I've got 10 bald spots now. At this point I really just wish it would all fall out so that I don't have to deal with these patches and wondering every day what's going to happen.



Numbers 3 & 6 were the first ones and have definitely grown. 5 is a tiny newbie.…

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Added by Mandy on May 15, 2008 at 10:57am — No Comments

Help find the cure

Have you registered on the Alopecia Registry? http://www.mdanderson.org/departments/alopecia/

It will help MD Anderson with research on the exact causes for Alopecia. It is also possible that you will be asked to go to level 2 and actually partcipate in a research study. I was surprised when I was asked to participate in the research. I am now in that process and would appreciate your good thoughts and prayers for it to go smoothly. I must fill out paperwork, visit a dermatologist and get… Continue

Added by Kelly on May 14, 2008 at 8:00pm — 1 Comment

A Little Upset...

Well, I AM RJ posted a forum called "What has alopecia done for you?" I wanted to read the responses, and well just got down.Everyone seemed strengthened for it and strong. So, I started thinking "what has alopecia done for me?" My answer, nothing. It has made my daughter's life such a struggle so far, and I am not looking forward to the future with all of the frustrations to come with teasing and dating. I don't know what to do. I am so upset tonight with the thoughts that this disease has… Continue

Added by Miranda on May 11, 2008 at 12:12am — 10 Comments

Wierd and Wonderful

I was having a coffee yesterday on the ASU campus and I saw a girl that appeared to have AT/AU. She looked very pretty, she didn't wear a wig or a hat. It was my first time actually seeing another girl with AA/AT/AU. I would have like to have spoken to her but I dunno what I would have said.

Added by Ev on May 9, 2008 at 2:31pm — 1 Comment

Whatdya mean it may not come back?!?

So I guess I'll start in September of 2007 -- when I went to my regular hair stylist for my regular monthly haircut. I had a full head of thick, dark hair. Or so I thought. She started cutting and pointed out that I have been thinning at a rapid rate. I honestly hadn't noticed a lot of hair loss previous to her holding up the mirror to show me. I was shocked, to say the least -- who looks at the back of their head on a daily basis? I didn't feel it while shampooing. Nothing -- because I…

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Added by Mike on May 6, 2008 at 9:30pm — 7 Comments

A small victory

I have been praying for my little girl! While I don't mind this condition, I don't want her to endure this harsh world. Children can be cruel. She was diagnosed with Alopecia Areata like 6 months ago. To think I was in total disbelief because this crazy condition has been a family trait. I am the only one to ever have AU. All that to say I cried many days for this child because I remember the hard times.



She reacted to topical treatments within a matter of months, something that… Continue

Added by Trina on May 6, 2008 at 2:10pm — 6 Comments

Frustrated

I've been recently (within the last 6 months) been diagnosed with Alopecia Areata. What I find frustrating is that my bald patches are so big I've given up and have shaved off my hair, but I still get random stubble patches.

I feel like if I'm not going to have hair, I'd rather just stop getting these patches of hair/no hair. I want my head to make up it's mind. I feel like I'm in hair limbo.

*sigh*

Added by heathen on May 6, 2008 at 11:45am — 8 Comments

Count your blessings

My fiancée, Cheryl Carvery, is not the first alopecic woman I've dated. Another one of my female companions was also bald, but I had forgotten all about it because my ex always wore a scarf and never made much at all of her baldness because, clearly, she had much deeper concerns.

My ex, whose name was Karen, also had one of her breasts removed due to cancer and constantly battled the disease after being diagnosed in her late 20’s. She endured a mastectomy and a seemingly endless…

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Added by rj, Co-founder on May 6, 2008 at 1:00am — 1 Comment

Something magic happens everyday!

I am so amazed by what is happening in my life right now...some passions and hopes that have been unfulfilled for many years are starting to come true one after the other. One of them happened today, and all thanks to AW. We had our first support group meeting here in the Phoenix area. I guess there was a meeting many years back that fizzled out. But I have been here 7 years and looked a few times in the past 7 years and there has not been one.



Five of us ladies came and we had a… Continue

Added by Kelly on May 4, 2008 at 12:53am — 10 Comments

Yet another disappointment :(

I talked to my mother yesterday. We have been discussing going to the NAAF Conference this year since January, and because she said she wanted to go, I went ahead and registered her for the conference. Yesterday morning I talked to her on the phone, and as usual she asked me if I was going on the family vacation this year. Just as I have answered every year like clockwork for the last 6 years, I answered that no, I wasn't. I don't like traveling with my mom's other kids because they aren't good… Continue

Added by kastababy on May 3, 2008 at 1:53pm — 7 Comments

I'm Still Not Brave Enough

I ordered a new wig. It's the same as my old one. I'm still not brave enough to try a different style. The style and color look nice anyway. Oh well, maybe in another 6 months when I get a new one again I will be a little more comfortable and make that change. I did order something called hat head. It's that thing that looks like a sling shot on the top (straps to hold it on your head) and has hair around the edges so you can wear a ball cap or bandana. I’m excited about it because I think it's… Continue

Added by Donna Evans on May 3, 2008 at 1:46pm — 5 Comments

This moment's for you

Life has a way of thrusting upon each of us conditions and circumstances that challenge us to discover what truly matters. Of course, to seize such moments and growth opportunities, we must first recognize them. We must see past whatever problem we're facing and truly grasp the growth potential. As one old song counsels, the one thing we must do right is, the day we start to fight, keep our eyes on the prize; for it's really how we deal with things, and not really the things we… Continue

Added by rj, Co-founder on May 2, 2008 at 11:30am — No Comments

I am not alone!

It's so funny how God works - everything has its own time and only He knows when the time is right. God comes along and says "OK, you're ready to receive this change and grow." I don't always want these changes. And sometimes, I have been praying for them for years and wondered why they were taking so long to happen. My journey from AA to AU started at four. Bald spots and thinning were a part of my life pretty much every spring of my childhood. I had no idea though, that ALL the hair on my… Continue

Added by Kelly on April 26, 2008 at 5:00pm — 2 Comments

Please give me some suggestions to help my daughter:)

My daughter was just diagnosed with Alopecia and I can see it is going to be devastating. I am supportive since I have it myself, but I understand how a female might feel a lot different. If anyone would like to be a pen pal for encouragement I would be so appreciative!

Added by John on April 25, 2008 at 3:11pm — 11 Comments

Article written in the local paper

For a lot of people, the condition Alopecia Areata Multilocularis (AA) means nothing.

Two years ago Lisa Goodman was amongst those who hadn’t heard the term before but in February 2006 she was diagnosed with the condition, which affects around 1 per cent of Australians.

AA is a non-contagious autoimmune disorder in which the body attacks its own hair follicles and suppresses or stops hair growth.

At first Lisa started losing hair at the back of her head and had a bald spot the… Continue

Added by Goody on April 21, 2008 at 11:41pm — 2 Comments

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