August 2012 Blog Posts (49)

To shave or not to shave

I am thinking about shaving what little hair I have left to buy a freedom wig. I have wore synthetics and human hair for the past 3 years but can't seem to find one that will stay in place. This is very important to me because I have small children and we are active. It is not a good feeling to be cruising through wal-mart and feel your hair slipping back from your head. If anyone has experience with the silicone cap I would love to hear from you. Does the hair hold up? My human hair wig has…

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Added by Cindy on August 31, 2012 at 10:00pm — 15 Comments

When the worst thing happens at work

Hi anyone and everyone who might read this. Yesterday I went into work for the first time since I got my wig (I have a job where I can work from home if I want to). I had been dreading going in because these were the people who I knew might say something because they've known me a long time, but people I don't feel close enough to to bear my soul and all my travails with my hair. The person I was most concerned about is the guy whose office is next to mine (I'll call him Jim). He's a real…

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Added by claudiaclaude on August 31, 2012 at 10:46am — 7 Comments

Kinda gross - but could this be a cure for alopecia areata?

I just saw this news story. It doesn't mention AA, but this new treatment is being tested in clinical trials on Crohn's Disease. I wonder if NAAF is aware of this. Here's the story, with the link below:

If you had a chronic and potentially debilitating condition such as rheumatoid arthritis or Crohn's disease, and swallowing the eggs of a pig parasite could help, would you do it?

The team at Coronado Biosciences Inc is betting you would.

The Burlington, Massachusetts,…

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Added by Mary on August 31, 2012 at 12:00am — 1 Comment

Happiness, sadness, and self esteem. Help

Recently I've been having some issues with my AU, after 4 years I still find myself upset and torn up (not all the time though). Believe me, I wouldn't change my trail and my struggle for anything, it's my story. My friends always tell me "alopecia doesn't define you" but in a way, I believe it does. Its made me who I am: strong, caring, compassionate, and very understanding. It's helped me look past a persons exterior and see into their heart. But unfortunately it hasn't exactly helped me…

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Added by Brittany Peterson on August 30, 2012 at 8:22pm — 4 Comments

Starting kindergarten with alopecia

My daughter has alopecia universalis for about one and half years. At present,90% of her hair has grown back. She will start kindergarten next year and i'm not sure how much hair she will have then.

I want to know if i should talk to the prospective schools principal. What are the things i need to discuss with them, like issues with teasing/allowing her to wear hats or scarves/ any previous experience with kids having alopecia.

Should I meet with school authorities and discuss…

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Added by madhu on August 30, 2012 at 10:00am — 10 Comments

Permanent makeup saved me!

I went and got permanent make up done at WakeUp MadeUp in Minneapolis, Minnesota and I couldn't be happier! I avoided swimming and exercising before because of my lack of eyebrows but now I feel a little more normal again! I can do the things I want to do without being scared.

I feel like I gained some of my confidence back and couldn't wait to share this experience with everyone. If anyone has any questions about the process, I would love to fill you in as best as I can!

Added by Baldilocks on August 30, 2012 at 9:30am — No Comments

Airport security check

Hi All..

I'm new to this website.. i use a wig which have metallic clips, but i understand, security check wont be a problem if i ask for privacy. but my question is, my passport have photo with wig, but what about visa? it requires recent photo.. So what do i need to do? should i give photo with wig or without? please advice.

Thanks

Added by Anupam on August 29, 2012 at 12:00pm — 7 Comments

New to universalis

Hi there,

I am from Thunder Bay, Ontario, Canada and I was first diagnosed with Alopecia Areata at 16 years old. I had a difficult time with my newfound condition as I was at such a delicate age. I endured the cortisone injections and was pleased with the results. The spots appeared on and off for the next few years but at one point, seemed to cease.

Unfortunately, it was too good to be true. I moved away two years ago and underwent a great deal of stressful events. My hair…

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Added by Baldilocks on August 29, 2012 at 11:00am — 8 Comments

My daughter

hi everyone my daaughter is 7 years old and she has alopecia and she is now waiting in her hair peice for kids she is very excited and so am i once we get the hair piece back i will load a before and after picture of her.

Added by Jennea on August 28, 2012 at 3:00pm — 1 Comment

Eyelashes

Does anyone know of semi permanent eyelashes that you can have applied.

Added by sharon gannon on August 28, 2012 at 2:56pm — 5 Comments

Beauti-Full-Brows

HAVE YOU TRIED THEM?YES I HAVE THEY WERE GIVING TO ME,BY SOMEONE SPECIAL,,BECAUSE I TALK ABOUT HOW EMBARRASSING MY EYESBROWS BE SWEATING OFF...THESE ARE TATTTOO EYEBROWS.THERE VERY EASY TO PUT ON TOO.

Added by Latina Sethman-Benthall on August 27, 2012 at 6:00pm — 2 Comments

Doctor says every form of alopecia is genetic

Except for my dad who has been receding since his 30's every one else in my family seems to have their hair. In conversation with my dermatologist last week, he said my AA is genetic. He says the gene lives and has lived within me from birth. He says it's been dormant, but something triggered it. He continued to say, that in so many people that have a genetic predispositon, AA could stay dormant their whole lives, while in others in shows up in their teens...or after episodes of stress or…

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Added by Sandy on August 27, 2012 at 9:30am — 17 Comments

Great children's book on avoiding teasing

I read this to a class of third graders while substitute teaching yesterday. Being that the whole incident starts with a bad hair day, I thought I would pass on a review I saw online (below). The book is Simon's Hook, by Karen Gedig Burnett. If AW allows the promotion of a particular book to grown-up newbies, I'm sure a book for all kids would also be allowed...yes? Here's the description:

Simon's Hook; A Story About Teases and Put-downs (Paperback)

When Simon is teased by his…

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Added by Tallgirl on August 24, 2012 at 8:00pm — 3 Comments

First (and 2nd) wig!

Hello anyone who might read this. Well, I did it--I cut off my hair today! I now have two beautiful wigs. I will post some photos tomorrow hopefully. They will still take some getting used to--I look VERY different and I am unaccustomed to having brushable/combable hair! But so far so good. I cried a lot while it was being cut but once it was over I felt free. The wig is very nice and light. Now for shampoo/conditioner... and hats! Oh, how long it's been since I've worn a hat.

Added by claudiaclaude on August 24, 2012 at 12:47am — 8 Comments

The day I knew something was terribly wrong

On May 13, 2012, I woke up like it was any other day. Ate breakfast and stepped into the shower. As I wet my hair, it started coming out. Clumps. In my hands, down my back, clogging the drain. I hurried, I wanted to get out of the shower fast, before I ended up bald. As I rinsed the shampoo out of my hair, my hands were getting tangled in all the hair. I put in some conditioner, and it just kept coming out in clumps. I rinsed as fast as I could and jumped out of the shower, soaking the floor…

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Added by bekind on August 23, 2012 at 5:18pm — 11 Comments

Just got my eyebrows tattooed on and loving it

Losing my eyebrows was like losing my hair all over again. However, after a year I finally got use to the look and liked it. It actually made my eyes look bigger and brighter. Last year I drew them on when I wore a wig for work, but it took so much time. Getting them tattooed on was a huge step for me, but I have to say that I love them. The woman used hair like strokes and it looks good. It was a shocker at first, but I am glad I did it now. I will post a picture after the touch up…

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Added by Rose on August 23, 2012 at 3:30pm — 5 Comments

Good news :) :) :)

I went to the doc. today for my usual injections and I was informed by the doctor that she is seeing regrowth !!!!!!! I have not heard this in a really long time, so hopefully it will stay this way cause my hair tends to be good for many weeks/months at a time then bad for an extended period of time.
I am soooooooooooooo happy !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Added by You can do it : ) on August 23, 2012 at 2:04pm — 1 Comment

Update on my medications and treatments - part 2

Hello,

I forgot to add in my last post that I have been suffering from some of the many side effects of the Plaquenil.



Some side effects include, tummy trouble, blue marks on your skin, depression, mood swings, sun sensitivity, vivid dreams and lower appetite. The only ones I seem to be suffering from are sun sensitivity and vivid dreams.

I have always been fair and sun sensitive but boy is it worse now!!! I feel like a smoldering vampire (like on tv) when my skin is…

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Added by Amanda on August 22, 2012 at 10:30pm — No Comments

Dying hair

I am new at this and actually still waiting for an appointment with the derm. My family dr. said it is alopecia. My question is...I still have a fair amount of hair (so far I have 6 round spots and thinning of the hair) and the rest of it needs dyed. I'm just wondering if it is a good idea to dye it or not. Just don't want to make it fall out any faster then it already. Thanks for any ideas :)

Added by Carrie Dow on August 21, 2012 at 4:16pm — 4 Comments

Two years since I've been here!

So it's been two years since I've been here. Last blog I wrote I stop drawing on eye brows.... Hehe.. I am excited to say I fully have my brows back! Completely. I pray this time it stays but if it goes I have the choice to draw on or keep off.



One of the very things I have enjoyed from 2010 till now is FREEDOM. I have been bald and happy instead of hiding being bald and depress. Of course there are days I wish I had nice flowing hair, or I could hide in a crowd with a long hair wig.… Continue

Added by Sam Sam on August 21, 2012 at 3:08pm — 2 Comments

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