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Alopecia Books

Hey Gang,

I have an idea!
How about passing around some books about alopecia? Once you read it write a note inside and pass it along.

Jeffrey

Added by JeffreySF on March 12, 2010 at 10:42pm — 11 Comments

Support group in S. California

I am in the High Desert area (Vicotrville) and am thinking of starting a support group ..anyone interested in Inland Empire area..or High desert..
Jean

Added by Jean Smith on March 11, 2010 at 10:41am — 1 Comment

Synthetic wigs

can anyone help as i get synthetic wigs from the nhs, i get 2 for 6months as they only last about 3, but i have only had them since january and they have hair comin out thro the top like ive cut lots of strands, they are suppose to look realistic and it makes me feel self consious, i was gonna go to a diff hairdressers that do wigs and ask as the hairdressers i go to say its something called permateze, dont know wat that is and if its meant to happen, they r both startin to look this way and i… Continue

Added by lynne on March 10, 2010 at 4:29pm — 12 Comments

Lichen planopilaris with frontal fibrosing - form of alopecia

Does anyone out there have this form of alopecia? How can so much of my hair fall out so quickly? How long does it take to accept and let it go? How do I know this is permanent?

Added by Diane Ciarlello on March 10, 2010 at 3:31pm — No Comments

Yay new wigs

I've been a little wig crazy lately. I bought 3 new wigs and they arrived a few days ago. I promptly popped them on to see how they look like. Am really liking having so much variety now. I finally got a long, straight haired wig which I wore out to dinner with Danjel. I giggled to myself as I wondered whether the security guards at our condo thought he was going out with a different girl behind my back. They probably recognized me but it's funnier to think what might be going through the heads… Continue

Added by Clara S. on March 10, 2010 at 6:30am — 1 Comment

What to do?

So, although my 13 yr old son Nathan is coping amazingly well, (I would think that we're probably at about 70% hair that has fallen out now and a lot of the sections that fell out earlier are now covered in a fine white fuzz which is great) he seems to be in another pretty active stage which is taking his fringe and the back sections too now. Which begs the question... when do you suggest/insist that maybe it's time that we cut the few bits that are still there short? I've let this whole… Continue

Added by Judith on March 9, 2010 at 9:50pm — 3 Comments

Maybe cruel but very very funny!

I work in a secondary school and wear 3 wigs and headscarves according to my mood. Some year 7's stopped me and asked if I had a twin who worked at the school as there is someone who looks like me but with different hair. I laughed and said I wear wigs. They wouldn't believe it and a particularly cheeky one said prove it then, take it off. So I did! Their faces were a picture, chin's hitting the floor doesn't cover it. I said was that ok and they said yes miss and sheepishly walked off. It was… Continue

Added by Sam G on March 8, 2010 at 4:35pm — 10 Comments

Brows and Lashes

Hey everyone, I would really appreciate some advice here.



A few weeks ago I noticed a tiny gap in my eyelashes and I immediately knew that was going to be the start of them, as well as my eyebrows falling out. I have lost almost all of my hair on my head, but I still have some at the back. I haven't had any hairloss from my head in over a month so I am hoping this is a good sign. However, my eyebrows are really starting to thin. I'm not sure if I am going to lose my brows and lashes… Continue

Added by Sarah McA on March 8, 2010 at 3:38pm — 11 Comments

141 days until our wedding

141 days until....our wedding!!! I've wanted to write a post about my fiancé for several months now. To share with this community the man who loves every part of me--the man who even loves that I do not have hair.



It is truly hard to put all of my thoughts into words. When I chose to not wear a wig, the biggest fear I had was dating. You can read some of my past insecurities in "Dating...Is it the hair?"… Continue

Added by Jill on March 7, 2010 at 12:00pm — 9 Comments

Wow! It has been a year since I got diagnosed

wow, i didn't realize how long it has been since i got diagnosed, but it has been a year, not much has changed and i'm still the same person i was before march 6th 2009, i'm still confident as ever, music is the still the constant for me and i'm still positive about everything whether good or bad, met a lot of good people on here, and i sure hope to meet more of you this year too, i hate to make this one short but i need to rest.


cheers!!



Paul

Added by Paul on March 6, 2010 at 11:00pm — No Comments

Theres hope! ahhhh! :))

A while ago my dad told me that a guys daughter that he works with had alopecia and she grew out of it completely by the time she was 18 :) I figured i would put this up and tell people this so they would have hope that it can go away. :) When my hair falls out it comes in spells and lasts for a couple of months and each time it falls out it less and less hair falls out each time. :D Is anyone elses hair doing the same thing as mine??

Added by Rachel Taylor on March 5, 2010 at 3:11pm — 5 Comments

Oprah's March magazine

Just wondering if anyone else was a disappointed as I was when I got this issue. One of the headlines was "When the one thing getting thinner is your hair". I thought finally there will be an artical to explain our situation. But when I read the one page artical I was stunned to see most of the page was advertisments for Minoxidil,finasterdie lasers and hair transplants!!! In the first paragragh they state"80% of the time regrowth is possible" they never even mention totalis or areata,they talk… Continue

Added by linda carraway on March 4, 2010 at 4:20pm — 5 Comments

Heartbroken?

It breaks my heart to see anyone with no hair, little hair, bald spots, or to find out that they have a disease that will cause that but it really put my heart in pain when I saw a little girl not even in her teens yet with no hair and I watched people stare at her like they thought she was from a completely different world. It brought tears to my eyes when I saw a grown adult ask a little girl, that looked to be about 7 years old, why she didnt have any hair. I mean are you serious?!Your an… Continue

Added by Rachel Taylor on March 4, 2010 at 3:12pm — 5 Comments

If you do NOT have alopecia...

If you do not have alopecia, please join the group "Non-alopecians in Alopecia World" and also consider participating in one or more of the following groups:

NAME: Non-alopecians in Alopecia World

DESCRIPTION: If you're a member of Alopecia World and you do NOT have alopecia, you should join this group. Share your unique concerns as a non-alopecian who's truly supportive of alopecians. Let us learn from…

Continue

Added by Alopecia World on March 4, 2010 at 12:00pm — No Comments

Get-togethers

Hi all. After having Alopecia for decades, I finally decided to go to a support group to find out if any new treatment plans have developed since I was first diagnosed. Treatments were all the same with much of the same results, but I enjoyed interacting with people that had the same thing I had. I was inspired to start a group but a motivational like gathering, so we Alopecians can meet and talk and share and cry and laugh together. I have the motivationals every month in Manhattan (New York… Continue

Added by Gale Moorman on March 3, 2010 at 10:30pm — 2 Comments

A cure that has worked for me

Now to set the record straight im not here to gloat im here to inform people about the success i have had from cortisone shots, forgive me if thats the wrong spelling.



The first time i had alopecia i was incredibly afraid of needles didnt get shots, well i paid for it in the end lost most of my hair but it grew back. Went around 2 years with hair and it was awesome, noticed a bald spot went in to see if there was any new treatment doctor said youll have the best luck with shots, i… Continue

Added by Kevin on March 3, 2010 at 9:27pm — 7 Comments

Who cares?

Okay i left work Yesterday without a hat on. I had my wig on. But I like to where my hat because it covers everything. And the first thought that came to me was someone on the train is going to stare down at my hair trying to figure out if its a wig, weave, or not, but i left anyway made it on the train without anyone staring. I decided to go shopping and after work i forgot about the whole not wearing a hat thing. As i finished shopping and stood online to buy pizza, thinking of what type to… Continue

Added by Sam Sam on March 3, 2010 at 3:13pm — 5 Comments

Venting

I must say I'm excited to have found this website! I am a newbie here but not to Alopecia. My son is 6 and was diagnosed at age 2 with just patchy hair loss. From there, it grew back, only to fall out more severely. To get it to try to look somewhat normal instead of just a really bad hair cut, I decided to shave his entire head about a year and a half ago. He is still completely bald and quiet adorable I might add lol Since, his eyebrows and eyelashes have came out too. This was the kicker for… Continue

Added by April Broughton on March 3, 2010 at 10:01am — 2 Comments

Roger Ebert is an inspiration - his words about coming to terms with his changed appearance

Film critic and author Roger Ebert appeared on the Oprah Winfrey show today. He's been battling thyroid cancer since 2002, and has had his entire jaw removed and has endured multiple surgeries and attempts to reconstruct his jaw. He can no longer eat, drink or talk, but he continues to write reviews and blogs. A full-page photo of him as he looks now recently appeared in an Esquire magazine article.

Besides the example he sets for everyone in dealing with adversity and…

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Added by Mary on March 2, 2010 at 7:58pm — 8 Comments

My First Marathon = 26.2 miles!

I’m alive! I successfully completed my first full marathon this weekend at the Rock ‘n Roll Mardis Gras Marathon in New Orleans this past Sunday with my Dad. We had beautiful weather (sunny and in the 50s), and there were over 15,000 runners! I was so nervous the week leading up to my race, but on race day I was surprisingly focused and calm. There were about 15 corrals of runners that were started in waves so that there wasn’t a stampede. My goal time was 20 minutes longer than my Dad’s, so…

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Added by Natalie on March 2, 2010 at 2:57pm — 6 Comments

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