May 2009 Blog Posts (109)

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My First Blog Ever!

This place is such a trip for me! I had no idea that so many others deal with the same basic problems I do. My form of alopecia is different from what I've been reading from many of those who have it. While most (at least from what I've read) once had a full head of hair and then lost it, I was simply born with it. I was completely bald at birth and very, very, *very* slowly started accumulating a little bit of hair. My hair has never grown past where it is right now though - very sparse, very… Continue

Added by Kathie Nietenhoefer on May 10, 2009 at 12:49pm — No Comments

RE: Just Wondering??

Just wondering,

Is pretty much everyone that is on here (this site) bald or wears a wig or scarf as their daily routine?? Are there any members that have AA and still have hair that they can wash and wear out in public still. I was told there are people like that with AA but I have not run into any people like that on here at all. Mostly everyone is bald or wears wigs. Once you are AA are you just gonna be AT and AU for sure and it's only a matter of time?? I was told different before but… Continue

Added by Melissa Harris on May 9, 2009 at 4:39pm — 8 Comments

My experience with Paul Byrom

Hi everyone! ....so this is my first blog, so I apologise if it's a little off!

So, I just wanted to share my little experience... I don't know if anyone else knows the group Celtic Thunder, but I'm really obsessed with them! They're a group of five solo singers from Ireland and Scotland. I promise all of you, I'm going to marry the 16 year old, Damian McGinty. He hugged me twice! ...But that's off topic.. Anyway, there's a guy in the group named… Continue

Added by Heather on May 9, 2009 at 1:32am — 3 Comments

I did it!!!

I just wanted to share with all of you an extremely positive thing that has happened in my life recently. As some of you are aware, I work for McDonalds and we just had McHappy day on Wednesday May 6. As part of our fund raising I promised to shave my head (kill two birds with one stone) I have AA and it was getting to the point of wanting to shave it so that no one would see my big bald patch showing through and it was to raise money for an amazing emergency shelter for women that is right in… Continue

Added by Tenille Gee on May 9, 2009 at 12:54am — 1 Comment

Alopecia at Work.

Hey guys, just a brief question. What have been your experiences as an alopecian at work? Has it prevented you from getting a job? Have things become weird at work because of your alopecia? Any advice or tips on what wigs look (and feel) comfortable and natural?
I'm new to the work force and am curious what I might be facing!
Thanks!
Alexandra

P.S. - If it makes any difference, my field will be marketing related.

Added by Alexandra on May 9, 2009 at 12:01am — 3 Comments

First Wig Experience

Just got home from a little shopping. I visited a small local store that specialized in cancer-related items, including wigs. They only had maybe 3 wigs in the store and only two catalogues of styles. This store only deals in synthetic wigs. She said that she doesn't carry human hair wigs because they don't last as long, require more maintenance and that the hairs tend to fall out, so they often need to go back in for hair to be added, which costs more money. Is what she said… Continue

Added by Tawny on May 8, 2009 at 9:49pm — 7 Comments

Haven't been around in a while...

... things have been super busy around our house. School for kids, school for hubby, school for me, volleyball for Shannon...



Shannon didn't respond to the steroid creams, and I wasn't willing to risk all the side effects of systemic steroids for the small chance of a response, so we stopped all treatment and we're going to just deal with what we have, and hope it resolves on its own when it's ready. Shannon's doing really well with all of this, I'm so proud of her.



So… Continue

Added by theantichick (Shannon's Mom) on May 8, 2009 at 4:17pm — No Comments

skin lupus?

Has anyone heard of skin lupus before? I know what lupus is, but have never heard of 'skin lupus'. I just had several skin biopsies where they are looking for 'skin lupus'. Its the next thing on the list (of doctor's guesses) to rule out. Does anyone else have this??

Added by Rachel on May 8, 2009 at 4:08pm — 1 Comment

Latisse

Has anyone tried Latisse for eyelash growth? I have lost most of the eyelashes on one eye. My Derm just prescribed Latisse. Insurance does not cover it and cost $125 for a 30 day supply. Since I only need it for one eye it should last for 60 days.

Angela

Added by Angela on May 8, 2009 at 7:43am — 2 Comments

That Old Chestnut Alopecia and Stress!!!!!

The debate over Alopecia and stress will go on and on and will probably never be fully resolved. Personally I don’t think stress is the cause as on the two occasions I came down with Alopecia I was not stressed any more than normal. The first time I got Alopecia I had AA and was so bad that I shaved my head. After several months I noticed that the patches had all disappeared and so I let me hair grow back. After another couple of months the patches started once more and so I shaved my head… Continue

Added by Ray on May 8, 2009 at 4:57am — 4 Comments

Depression??

My daughter made a statement the other day.... she looked at a picture of herself and said "me, back when I was pretty".



Lately she has been very moody, very emotional... crying over the tiniest things, like my husband breaking her burrito in half, and she doesnt sleep well at night etc.



As her mother naturally I am thinking she is becomming depressed, or some other emotional problem is occuring that we are unaware of.



She has an appointment with her Dr.… Continue

Added by Tracy on May 7, 2009 at 8:24am — 4 Comments

I got questions

I got lots of questions ?? but not any answeres.I ve heard some Drs. somewhere found a genetic link between naturally bald mice and victims of alopecia areata turns out there might be a ressesive gene we share. within victims of aloepecia this gene when activated due to trauma excessive stress illnes will triger that dormant gene activating it and, wolla! presto magic alopecia areata of the worse kind, the real trick in that case is how to put it back to sleep. Ive also heard it could be… Continue

Added by George Ortiz on May 6, 2009 at 10:09pm — No Comments

ANYONE ELSE ALLERGIC TO SYNTHETIC WIGS?

HELLO IM PEGGY, NOT ONLY HAVE I HAD TRAUMA DEALING WITH BEING DIAGNOSED WITH AA, I WENT TWO WEEKS TRYING TO DEAL WITH IT AND THEN AS MY HAIR FELL OUT TO MUCH TO COVER UP I BUZZED IT. AND DELT WITH THAT FOR AWHILE AND THEN RAN AROUND CRAZY HUNTING WIGS TO HAVE WHEN I HAD TO GO BACK TO WORK. THE TWO I BOUGHT WERE LIKE 500 BUCKS TOGETHER WERE TOO BIG WHEN I GOT HOME. THEY WOULDNT TAKE THEM BACK AND I CANT GET THEM TAKEN UP ENOUGH WITHOUT HAVING A BIG LUMP ON THE TOP OF THE WIGS. WELL I DELT WITH… Continue

Added by peggy thompson on May 6, 2009 at 10:01pm — No Comments

my 8 year old little girl is losing hair

HELP...I noticed my 8 year olds hair thinning about 8 months ago. I took her to the dermatologist. She ran some tests-thyroid- and it all came back normal. Two weeks ago, I noticed significant hair loss again. She has very little hair on the top of her scalp, her eyebrows have thinned out, and the hairs on her leg has disappeared. I have noticed she has short thin hair-white in color- growing. On her scalp, it looks like fuzz-spring like- very little waves and has no color. On her arms and… Continue

Added by Tammy on May 6, 2009 at 8:53pm — 1 Comment

New Hairpiece...new feelings...

Well today I got my very first hairpiece. I LOOOOVVVVEEE it!!! I feel beautiful!!! I felt confident in my buffs and bandanas but it wasn't quite me. But today I feel awesome. The first time in a long time. My hubby LOOOVVVES it as well. He has been such a crutch in this whole continuing journey. My hairpiece is longer than I wear my hair but almost an exact match in terms of color. Giselle, my hairpiece sensai, said it well "I guarantee you can go shorter, but length...not going to happen" I… Continue

Added by Jennifer Krahn on May 6, 2009 at 7:37pm — 12 Comments

Grieving a loss of what could have been

My sweet 13 mo old started losing her hair. She was always very small, failure to thrive in fact. Her ped just continued to say she was fine, just a slow grower. I knew otherwise, but few listened. I guess they thought I was a paranoid mom, even though I never had these fears with my son who is almost 4. So when she started losing her hair I tried to look the other way. This worked for about a month, until her grandmother said something. That gave me the kick in the butt to take her to the ped,… Continue

Added by Angie, Gracie's mom on May 6, 2009 at 6:23pm — 3 Comments

"THAT MAN HAS ALOPECIA TOO MAMA" She yells

So when we moved into our appartment there was carpet in the kitchen....yeah not really feezable with two kids right. So we got it replaced with lanolium, well the men were finishing yup doing it and headed down to their van. (were second floor) She runs to the belconey and says mama he has alopecia too!!! All excited! Then I explained to her that men lots of time loose their hair with age. It was so cute!

Added by Tasha Dingler on May 6, 2009 at 1:26pm — 3 Comments

RE: Question for anyone that has had shots!!!!

Hi there all,

I was diagnosed back in August of 2008 and probably started hair loss back in March-April 2008. I did receive 3 treatments, shots on my scalp and the big shot in the butt. My last Big shot was back in October and the ones in the scalp were in November 2008 I was doing great until very recently. I lost a tiny bit if eyelashes, really small area and now I felt like I was shedding again more on one side. It's not really terrible shedding, but still I am so aware of when I loose… Continue

Added by Melissa Harris on May 5, 2009 at 9:10pm — 5 Comments

Bio Matrix wig is in!

Destiny just got her bio matrix wig on Friday. She loves it. She has been swimming in it twice already, and is going again tomorrow. It looks wonderful, and she says it is not hot at all. I am so thankful to HCK...we love it!

Added by Destiny on May 5, 2009 at 5:57pm — 3 Comments

Distracted

I was at a conference last week and found myself quite distracted during most sessions because I couldn't help but examine everyone's hair. Not one person(98% of people in attendence were female) had hair as thin as mine. Everyone else's was thick and 80% of the women had beautifully styled hair. I wondered if any of them were wearing wigs! I was so self-conscious most of the time.

We went out for dinner and shopping one evening and it started to rain while we were walking outside. Ugh!… Continue

Added by Tawny on May 5, 2009 at 10:22am — 10 Comments

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