Shea on Alopecia Treatments

“It has taken me a really long time to be okay with alopecia being a part of my life. But I still have days when I hate it. When my wig doesn’t go on properly or my eyebrows don’t go on properly or I just want to be like everybody else, to be able to just chuck my hair into a ponytail.”

Shea is one of AAAF’s Support Ambassadors. Here she shares her experiences with treatments for Alopecia Areata and her own personal journey with this condition.

 

*Keep in mind that this video contains some non-graphic discussion of medical procedures. Viewer discretion is advised.

 

The Tropical Challenge – Beating the Heat while living with Alopecia

alopecia-and-hot-weather-author-linseyBy Linsey

Living in the tropics and coping with alopecia has been an interesting challenge for me.

I grew up in Indonesia practically on the equator. It was hot, sticky and 100% humidity. When I first got a wig I still had quite a lot of hair on my head— hair that I was not ready to give up on or shave off. I was thirteen and I didn’t want anyone to know I was going bald. I was so ashamed. So I wore my wig on top of my hair, sometimes even to bed. I broke out into heat rash on my head and my face. My skin was not happy and neither was I.

Continue reading “The Tropical Challenge – Beating the Heat while living with Alopecia”

Bald Girl in the Dating World

A reflection of my journey, a bald girl in the dating world.

I am Bianca and I’m 41 and single.
Some time ago I shaved my head and started living my life as a bald woman with Alopecia. The grieving that followed that was indescribable.

Over here in my bubble I assumed I was no longer feminine, I felt ugly.

I looked in the mirror and was mortified at what was looking back at me, I no longer knew who I was. The image I had known as “me” for as long as I can remember was gone and something very different, something very confronting stared back at me. When I went out to bars and clubs, men and women stared at me, in fact whenever I left the house people stared at me. Continue reading “Bald Girl in the Dating World”

Taking the Plunge: Telling people about your Alopecia

There was a time in my life where I would’ve preferred to run 10 km in spandex through Melbourne CBD than tell any of my friends about having Alopecia. Luckily, as I got older, I realised that people probably wouldn’t act like I’d committed a mortal sin for having the audacity to get a chronic illness. It was a process. That being said, I’ve had some amazing experiences and some not as good experiences when telling friends about this condition. Whether you want to tell your whole school, someone at work, or a new friend or partner about your alopecia, it can feel pretty scary. But with the right preparation and the proper tools, it doesn’t have to be. Learn from my mistakes Young Padawan and stock up your arsenal of awareness weapons.  Continue reading “Taking the Plunge: Telling people about your Alopecia”

What NOT to say to someone with Alopecia

gemmaHi, I’m Gemma. I’m 22 years old and I’m a registered nurse. I first lost my hair last year when I was 21 and working at a nursing home. I’d worked at this nursing home for 2 years already so I was well known by all the residents. However, I soon discovered that sometimes elderly people say whatever they want without really thinking about it, which, let’s face it, if I had lived a whole life censoring myself in society, I’d stop trying when I was old too.

One day I was having a particularly emotionally hard day at work, and I decided to write a response to every comment that had been said to me since I started losing my hair, and created this list of things not to say to someone with alopecia.  Continue reading “What NOT to say to someone with Alopecia”

Beyond Brows – A Guide to Universalis

Alopecia Areata is never a smooth ride, but for those living with total or near total hair loss to the whole body (called Alopecia Areata Universalis) the condition can have extra hurdles. The loss of brows and lashes can be a blow to self-image and greatly effect self-esteem and confidence. Fortunately, there are many guides out there for how to manage these appearance issues with through makeup.   But body hair has a range of functions beyond appearance, and many alopecians find themselves surprised and unprepared for the ways universalis can affect them.

Never fear, my friends. Love, Alopecia has got your back. Drawing on many years of experience managing the weird, wonderful and oft overlooked side effects of all over hairlessness, we’ve created this super convenient list to help you, whether you’re new to the AU experience or an experienced veteran. Continue reading “Beyond Brows – A Guide to Universalis”

“Courage was not the absence of fear, but the triumph over it.”

Hauling a tripod only marginally smaller than she was, my 5 foot nothing best friend struggled down the school corridor. A camera strap was clamped under one arm and a school bag over the other. She had two jobs for today: keeping me calm and filming my talk. Judging by her load, she intended to take her jobs very, very seriously. I stifled a grin.

We all waited in the bathrooms of the gym, four of my best friends and I.
The shuffle of unbuckled t-bars and the muted voices of my passing peers sounded more ominous than they normally did – like a brewing storm preparing to swallow me whole. They were probably filing into the year level meeting talking about the latest cat fights and boy drama or the stack of unfinished assignments piling up on our desks. Not for long though.

Apart from my friends, nobody knew I had Alopecia. Continue reading ““Courage was not the absence of fear, but the triumph over it.””

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