All Blog Posts (5,814)

Musicians and lyricists!

So, at our Sacramento, California support group meeting, we kicked around an idea about a Northern California Alopecia mini-conference or weekend workshop, with part of it's being a song-writing session for attendees. The lyrics created could be set to well-known melodies, but would need actual guitar (or other) players for presentation. Are any of you musicians on the West Coast able to fill that roll? Let me know...and attach a link to a YouTube of you and your playing ability. We are…

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Added by Tallgirl on April 19, 2018 at 5:35pm — No Comments

I've got some hairs!

I'm going on my 9th year with Alopecia Universalis. I struggled with this for years. I decided that I was going to heal it naturally with diet and exercise because the medications that were being prescribed for me were interacting with my epilepsy medication. 

I started out with a raw vegan diet and lots of juicing. It really didn't do much for me. I loved fresh juices and they tasted great, but I lost weight. That was about it. I also looked a bit too thin. 

The next diet I…

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Added by Melinda on April 6, 2018 at 2:21pm — 4 Comments

Caught Off Guard

Since I haven't shaved my head in several days, I was able to notice that my alopecia is active and I have several new spots that are completely bald and a large patch on top that is almost gone. I have to admit that I'm a little bit more upset than I probably should be, mainly because it caught me off guard.

After 36 years of living with alopecia, you would think I'd know better than to get upset when my hair starts falling out again. After 36 years, you would think that I…

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Added by kastababy on April 1, 2018 at 8:43pm — 12 Comments

My Alopecia

I'm new here, and I'd like to start out my introducing myself my name Pamela and I'm 26 yrs old. Honestly dont know how I came across this page. But I've read up on some of the types of alopecia there is. And I've never been to a dermatologist for mine. But all the ppl I've talked to that knows someone that has it has never heard of it. I've had mine since birth, and my hair has never grown in, it's like a babies hair. Nor is full neither. I dont know much about any of this and have always…

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Added by Pamela F. on March 30, 2018 at 12:42am — No Comments

10 years later...

Hi everyone, its me Merari who has Alopecia, typing this blog post right now after years and years of this page being inactive...

As you see the past posts, my aunt Jennifer was the main person active on here. She found my first coin sized ball spot on my head one day doing my hair. She created this page for me to get help, and more information about this disease. My mom has also been a part of this page, posting once…

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Added by Merari's Page on March 29, 2018 at 1:00am — 2 Comments

People who don't know you have Alopecia

I would like to get some of the comments about how you deal with people who don't know about your Alopecia case but keep asking questions or even try to touch your hair.

Added by Milena on March 28, 2018 at 12:34pm — No Comments

Alopecia Is Fashion Campaign

Hello

Has anyone seen the #alopeciaisfashion Hashtag?

We are doing a campaign to talk about issues in the fashion industry with Alopecia and also to say yes we can be whatever we want to be in the fashion industry with Hair Loss. Please hashtag #alopeciaisfashion in all your Instagram posts, twitter, facebook. The campaign is a brainstorm of hair Heals Organisation who support all affected by Hair Loss with buying wigs, beauty…

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Added by sClaire on March 28, 2018 at 9:44am — No Comments

Chat on Alopecia World

Hello All,

There is a Chat function on Alopecia World that seems to be underutilized for direct communication and support.

I would be happy to be a host on a weekly basis. Lets chat and get to know each other.

Anyone interested?

Ideas or suggestions are welcome!

I've found this sort of communication to be quite helpful in the past. It can be fun too!

All the best to all!

Jeff

Added by JeffreySF on March 28, 2018 at 1:30am — 10 Comments

Reimbursement for wigs

If those who have cancer can get a prothesis for breast cancer, why can't wigs be reimbursemented?  I don't feel there is any difference.

Added by Claudia Lewis on March 28, 2018 at 1:20am — 1 Comment

JAK Inhibitors

Hey Everyone!

So just a brief history.

I've had AU since June 2014. It started of as AA to AT to AU. All my hair fell off, from everywhere, including eyelashes and eyebrows. I've tried all forms of treatment, be it steroid tablets, injections, mynoxidal solutions, UV therapy, you name it. None of them worked. My eyebrows and eyelashes did grow back. In 2016, my hair grew back for around a month and then it fell again. 

After that, I sort of gave up and went off all…

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Added by Ithastogetbetter on March 10, 2018 at 2:30pm — 1 Comment

Considering shaving my head

Greetings, I have Frontal Fibrosing Alopecia. It is an insidious disease. I am on meds, but I want to stop. I have so much anxiety about my hair. Watching the slow progression of my hair loss and wondering when the next flare will occur and how much it will take causes me to despair.   I have started to wear my hair up. I want to wear this with pride. I feel like shaving my head will rid me of some of the anxiety of waiting for it to go. Tell me about your experience of shaving your head. I…

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Added by maremo on March 8, 2018 at 1:31am — 1 Comment

Insurance coverage for wig

For the last two years I've successfully received reimbursement for my wig once a year for $350. It's always been a fight, the first time I had my states attorneys office step in, the second time I was able to do it on my own even after the claim was initially denied. This time I am completely unsuccessful. I contacted the states attorneys office a while back but never got a response. Now I was just told that my claim would not be granted because it is "cosmetic". Which is BS on its own…

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Added by JessicaStinkle on March 6, 2018 at 10:15pm — 17 Comments

Student with Alopecia takes the crown at local pageant

""Bald is beautiful" isn't just a motto for one Gilbert Middle School student— it's a lifestyle."

I recently came across this article on wxlt.com that I thought I would share with the community.

"Gracie Ann Roland was diagnosed with alopecia, a condition that causes hair loss from some or all areas of the body, a year ago."

"Rather than letting her…

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Added by Cheryl, Co-founder on February 27, 2018 at 12:30pm — No Comments

My Journey

I been diagnosed with Alopecia universalis since 17 years old, I am 25 now and I am still the same. This year is my first year I am barley starting to feel a little more comfortable with telling people about my condition. It is extremely still hard for me to be open about it, because deep down I still feel very different from everyone else.

Added by Jazmin M. on February 19, 2018 at 6:53pm — No Comments

Alopecia for 8 years and still counting

Hello everyone, I finally have had the courage to speak up and say I HAVE ALOPECIA! Since the age of 11 till now going to be 20. It has been emotionally painful  having to loose my hair at such  a young age. Also, I came to a point where I hardly came out the house because I felt really uncomfortable for everyone to notice the patches on my scalp. I have also tried and experiemnted on various different treamnets and all have failed. I have now lost more than 80% of my hair and my eyebrows…

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Added by Aisha on February 18, 2018 at 5:42pm — No Comments

Alopecia universalis treatment

Hi everyone! I am a new member here. Are here people who tried treatment with NAC and methyl forms of vitamins B?

I have alopecia since 2010 when I was 19. It became universalis in 2012. I never tried immunosuppressant therapy, however I know it could help if I try. But I believe that it could make things worse after treatment cancellation.

I am trying not to inhibit my immunity, but make it work on right way.

I tried different things, and last…

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Added by Tatyana on February 3, 2018 at 8:30am — 6 Comments

Support group

Is there a support group in Cincinnati, Ohio?

Added by Dolphingirl on February 2, 2018 at 9:39pm — 1 Comment

Masquerade, costume party at office - ideas?

Hi, i'm usually going "topless", with no wigs or scarfs, for years. And for the first time I want to emphasize my head on our annual costume party. Do you, dear friends, have ideas for "bold" costume? The only one I found it is about dragonmoon superhero, and it won't be familiar to my colleagues :)  

Added by olkabul on January 25, 2018 at 7:39am — 1 Comment

Just diagnosed with frontal fibrosing alopecia

Hi, so glad to have found this forum, just before Christmas I went to have hair cut and my hairdresser was in shock at the loss of hair on my scalp since the last cut.  Needless to say he was pretty blunt and filled me in with horror stories.  I promptly went home and search Ed for a dermatologist in Melbourne who specialises in hair loss and managed to score an appointment on a cancellation.  Fast forward I had my appointment and apart from my diagnosis have been prescribed : aldactone,…

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Added by Plf on January 25, 2018 at 12:48am — 2 Comments

Pregnant and stopped taking Xeljanz (for AU) - help!

Hello!

I have Alopecia Universalis and had been taking Xeljanz consistently for about 3 years. Once totally bald, with Xeljanz, ALL of my hair returned. It was a miracle! 

4 months ago, I got pregnant, and stopped taking Xeljanz. About 3 months in, my hair started to fall out (seemingly overnight!). As someone who has been down this difficult road before, it is quite terrifying. :(



Post-pregnancy, once I return to Xeljanz, I am hoping and praying…

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Added by LauraL on January 21, 2018 at 12:23pm — 3 Comments

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