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.

 

Discussion Series: Would you peel the scalp of a two year old?

 

Twenty years ago my journey with Alopecia Areata started.  My son, then 20 months old, had a chicken pox that rested at the hairline on his forehead.  Within days his hair had fallen out and was starting to receded down the center of his scalp.

With no knowledge of the cause and no visible sign of hair regrowth, off we went to the dermatologist.

On inspecting my son, the conclusion was Alopecia Areata. After the general questions probing what that meant, came the question from me “so how do we treat this”.

I’ll never forget the following words.  Continue reading “Discussion Series: Would you peel the scalp of a two year old?”

“Alopecian” – A Language Guide

ALOPECIAN
[Pronunciation: al-uh-pee-shee-an]

Noun (Informal): A person who has a form of the hair loss condition known as Alopecia or Alopecia Areata.

Plural: Alopecians

Examples:

  • Alopecian women and girls often have a very different experience with the condition than men and boys, but the common assumption that alopecia is ‘easier’ for males is incorrect.
  • Having been an alopecian for most of my life, I have a very different experience in crowded, public spaces than people who do not have such a visible difference.
  • As an alopecian, I loathe being called an alopecia sufferer.

Continue reading ““Alopecian” – A Language Guide”

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”

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