All Blog Posts (5,829)

Bald Woman Problems

I have lived with alopecia universalis for 9 years now. Yikes! All of my thirties were bald! In this video, I share some of the challenges that being bald can have that most people don't know about or even think about. 

First and foremost, let's talk about wigs. If you have more than one, people will notice,…

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Added by Melinda on May 8, 2018 at 9:30am — No Comments

Hot and tired

I am so so tired of wearing my wigs.  some days I'm over heated other days I am self conscious.  Other days I am depressed and embarrassed. Yesterday I went out to get my nails done, when I got home and took off my lace wig my head was soaking wet.  This morning I didn't even have the desire to put a wig on and go to work.  I just stayed home.  it's been many years but I still miss the days when I could get up and pull my hair back in a pony tail.  It's been over 20 yrs and I am still in…

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Added by Shelly on May 7, 2018 at 7:24pm — No Comments

What's Behind the Veil

Alopecia: What’s Behind the Veil

When I look in the mirror, I see my brother.

Now, nothing wrong with that - he’s quite a good looking guy.

But he’s a guy!

None of the men in my family have hair. Nothing on the head, no eyebrows, eyelashes; nothing on the, arms, legs or other unmentionable places. My dad lost all at the age of 8 after two successive bouts of scarlet and rheumatic fever. My oldest brother lost…

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Added by Sherrie Saadeh on May 7, 2018 at 2:27pm — No Comments

I Quit My Job Because of My Alopecia

I loved swimming. I was a swimmer and as an adult, I taught swimming classes. I was great at it. Then I started losing my hair. I went bald really quickly. I have Alopecia Universalis. For about a year, I taught swimming with a wig on. Most of the instruction was simple enough that I didn't have to demonstrate for the kids. I chose a stellar student and had him demonstrate.

I wore a really cheap artificial wig. It fooled everyone. I didn't have to deal with comments on my health. I…

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Added by Melinda on May 7, 2018 at 5:00am — 27 Comments

To Wig or Not To Wig .... That is the question?

for me wig it! 

Added by kimk on April 29, 2018 at 4:59pm — 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 — 5 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 — 11 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 — 2 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 — 1 Comment

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 — 7 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 — 2 Comments

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 — 2 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

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