March 2018 Blog Posts (9)

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…


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…


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


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…


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!


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…


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…


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…


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

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