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Expectations of a NAAF conference newbie

In just over a day from now, I will be attending NAAF's annual conference for the very first time in my life. Of course, I owe this honor to my fiancée and co-founder of Alopecia World, Cheryl Carvery, who has been living with alopecia areata for nearly 20 years. Since it is my pleasure to support Cheryl, and given my involvement with Alopecia World, I am excited to have the opportunity to attend this year's conference. However, this means that I am going to miss seeing my middle daughter's…

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Added by rj, Co-founder on June 18, 2008 at 1:00am — 9 Comments

"You're taking this so well..."

I can’t count the amount of times I’ve heard those words. It seems like daily I have to explain to someone about the disease, which really isn’t that big of a deal as I pretty much have the whole explanation down. But I have had a wide variety of responses, some of which have been surprising including making a grown man who is the husband of one of my elementary teachers break down into tears.



The one response I keep getting though regardless of whether the person reacts in a… Continue

Added by Drew on June 17, 2008 at 10:35pm — 5 Comments

1st Wig Shopping Adventure

So I went wig shopping for the first time...it was actually pretty fun. Got to learn about different types of wigs and try on different hair. I didn't buy yet, because I wanted to sit on the info for a bit to make a decision. But I'm pretty sure I know what I'm gonna do. The purpose of this 1st wig is just to have one that looks as much like my natural hair as possible...have it at home so that when that day comes that I wake up and realize I can't pull off the ponytail anymore, I'll have the… Continue

Added by Mandy on June 13, 2008 at 11:31am — 10 Comments

7 days

Day 7 with the new hairless do. The response has been better than expected. Most have been complimentary; some have shown surprise; only the village idiot went someplace he shouldn’t…something about how I should tell folks my hair loss was due to chemo. I could hear the sighs and mutterings of those who were within earshot of the ignorant suggestion. Discretion being the better part of valor, I simply shook my head then walked away.



Yesterday was a tough day, marking the first time… Continue

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

Thinking about Shaving the rest? I did!

So as promised, here is my blog on shaving your head. I'm thinking about posting this on the forum too. Let me just start with some background info: I got so sick of thinking people were staring at the spots and tired of running my hand through my hair only to have 20+ hairs stuck in-between my fingers when I pulled them away. I also got sick of wearing a hat every single day and not going to functions that I couldn’t wear the hat at because I felt that the spots stood out more than I did as a… Continue

Added by Drew on June 11, 2008 at 11:36pm — 7 Comments

Dating at any Age and Stage.

Dating can be scary at any age.

I look back as a 16 year old girl on my first date. I was incredibly nervous as well as wondering what this boy I was in a car with alone was going to do because before then we had only been in group settings. My 3 brothers and 2 sisters had told me horror stories about what dates were all about. They loved to tease me as a child and this continued into my teen years.



After seeing clips of this video

( …

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Added by Billie on June 10, 2008 at 5:00pm — 4 Comments

Taking back control...

I was very surprised to see that people noticed I haven’t been on here in like a week. My grandmother owned a cottage (and four more she rented out as a small business) on the river up here and so every three weeks my family gets to stay (the other two weeks my dad’s two brothers get to keep it fair). It was nice to enjoy the nice weather we’ve had. And then on Thursday I turned 21 and somehow (I don’t know how) survived the night with my friends.



So where to start on all that’s… Continue

Added by Drew on June 8, 2008 at 9:36pm — 2 Comments

A new beginning

I took the step last night and shaved my head. The barber was great. She bushed my hair down as far as the clippers would go, then gave me some tips on shaving the rest. Her compliments on my new look, whether real or a ploy for a good tip, bolster my self esteem. I was appreciative of the compliments regardless of her intention. Head held high, I left the shop, then stopped to pick up some new blades for the razor. What a great feeling to be confident once again.



The shave was… Continue

Added by Tony on June 6, 2008 at 7:19am — 7 Comments

The only constant is change

A calendar hangs on the fridge for the family’s activities. A new pencil was hung at its’ side earlier this year in anticipation of the inevitable frenzy of the approaching summer. A selection of colored pens were gathered and placed into a nearby drawer. Out of quick reach, the pens are intended for events such as birthdays, holidays, graduations and the like whose important dates are set in stone.



The pencil is used for everything else as the only constant in life these days is… Continue

Added by Tony on June 3, 2008 at 12:10pm — 2 Comments

How do you get a closer shave?

I have (had?) dark hair and very light skin.

My AA patches are many and they are big, so I've taken to shaving my head, but I don't like the look of dark stubble in the places where I do have hair?

Are there tricks to getting a closer shave?

I tried nair once, but ended up with an icky rash, I guess my skin was too sensitive.

Help?

Added by heathen on June 2, 2008 at 9:39pm — 4 Comments

The Great British Body has Alopecia!

Thank you for all your lovely comments about the show and I do hope that everyone will get an opportunity to see it at some point. The wonderful thing is that I was selected as The Great British Body!! A naked human sculpture on the Sussex Downs was in the shape of my body and when I took my wig off - everyone who represented my hair stood up and walked off!! How cool is that!

Anyway, it's a huge boost for anyone who experiences hair loss and a big thumbs up for all us girls out there who… Continue

Added by Michelle Chapman on June 6, 2008 at 1:15pm — 13 Comments

Missing my eyelashes

I guess I'm having a reaaaally bad week, I'm missing my eyelashes more than ever. I got a new full lace wig (I call it my hair by the way, hate the word wig) recently and I love it , so i don"t really care about being bald. Got my eyebrows tattoed and I like them so that is OK. But my eyelashes can't be replaced...I don't wear the fake ones unless going to a party or something like that but even when I do, it's just not the same ...Lost my eyelashes 6 months ago and I wonder if they will ever… Continue

Added by Gina on May 29, 2008 at 8:00pm — 13 Comments

The results are in

The doctor’s office called yesterday with the results from last week’s blood test. Nothing remarkable. I’m relieved, yet disappointed, as I was hoping for a treatable cause along the lines of a fungal infection. Amazing that one would wish for a fungal infection. All things considered, the alternatives could have been much worse than a dx including the term idiopathic – that’s Latin for unknown origin…medical speak for they don’t have a clue.



They offered a referral to a… Continue

Added by Tony on May 29, 2008 at 11:55am — 1 Comment

Different Types of Alopecia

First of all, I want to say that everyone on this site is such a wonderful and beautiful person both inside and out.



So folks, I am not totally bald (I know I need a picture, but my husband hates taking them and I hate asking). I guess I have felt that having really thin hair on top is both a curse and a blessing all the same. I mean since I have eyelashes and eyebrows I am not as susceptible to illness, but also people still question me about why I wear a wig and what kind of… Continue

Added by Danna on May 29, 2008 at 12:33am — 6 Comments

In defense of Carol's recent blog

Carol has a blog entitled, "Treatments are NOT cures" on her page, and it is definitely a hot-button subject guaranteed to get a lot of buzz. I am in total agreement with the blog posting, and you can read it on her page at your leisure. However, in the interest of conserving space on her page, and to provide an additional space for your opinions, I have chosen to post my response to the blog here. Please tell me what you think.



Carol, I'm glad you made this vent rather than… Continue

Added by kastababy on May 28, 2008 at 9:30pm — 7 Comments

2nd derm appointment today

Well so I had my 2nd dermatologist appointment today. It was kinda depressing. The doctor was upset the spots had spread as much as they had in only 3 weeks. He said, "I had a feeling this was going to happen with it having coming on as quickly as it did." He said that usually when it starts so fast like that (I had 4 spots right away within a week at first) that the treatments are usually not as successful as someone who just goes in with one little patch (based on what he's seen in his… Continue

Added by Mandy on May 23, 2008 at 3:44pm — 4 Comments

Support Groups

I’ve kept pretty much to myself these past few weeks. In retrospect, distancing myself from family and friends was a not one of the smartest things I’ve ever done. As the saying goes, “no man is an island”. It was time to move forward.



Despite my trepidation, I ventured out to the local NAAF meeting last night. Glad I did. What I found was support, camaraderie, and much needed laughter. As if amongst family and old friends, I felt comfortable figuratively, as well as literally,… Continue

Added by Tony on May 23, 2008 at 11:40am — 6 Comments

I've become a human pincushion

I’m not a fan of needles. But about once a month I would make myself suffer and go to the dermatologist’s office just to get the injections in hopes of making the hairs grow back on the ever-growing bald spots on my head. A few times with little to no effect and I decided to start looking for something else.



One day after missing a class because of my dermatologist appointment I went to talk to my professor about making up the work I’ve missed. The teacher (science course) also… Continue

Added by Drew on May 21, 2008 at 9:34pm — 5 Comments

My new Hair!

As my previous post said, all my spots are really in the back of my head. So, I can cover it if it is not a windy day. We'll yesterday I went to the mall. The little carts that they have in the center of the mall? They have one that sells hair extensions. They just clip in, and you take the in and out everyday. It is synthetic hair. So I tried it! I love it! I have pretty long hair. And I love the weight of them, it won't blow as much on the windy days, and will look cute in a pony tail! We'll… Continue

Added by Jennifer on May 21, 2008 at 11:00am — 3 Comments

Talking to my daughter

Kids. They know more than we realize yet less than they might think. Disinformation is often more troublesome than no information at all. Imaginations run wild, thinking the worst…afraid of the perceived truth.



Such was the weekend. I was worse for wear but managed to smile despite the trials and tribulations of the week. Apparently my best attempt at a happy face was less than convincing as my youngest daughter sensed something was amiss. Her nervous demeanor was obvious as she flit… Continue

Added by Tony on May 19, 2008 at 11:58am — 2 Comments

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