Alopecia – Ask the Experts

Two representatives from AAAF were able to attend this year’s National Alopecia Areata Foundation Annual Conference in Miami, Florida. This event is one of the largest gatherings of people with AA in the world, and was a fantastic experience to see and speak with so many people living with condition from all across the world. One of the most attended sessions was an Ask the Experts session, where the AA community got to pitch our questions to a range of alopecia specialists, including researchers, dermatologists, and clinicians. The panel included Richard Long, Gabriela Nero, Maria Hordinsky, Brett King, and Natasha Mesinovska.

Our representatives collected the questions asked in the panel and took notes on the responses to bring them to you.

Continue reading “Alopecia – Ask the Experts”

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Self Love for Alopecians

“You can search throughout the entire universe for someone who is more deserving of your love and affection than you are yourself, and that person is not to be found anywhere. You yourself, as much as anybody in the entire universe deserve your love and affection.”

-Buddha

So, what is self-love, you ask. Self-love has become the latest super food for the soul but very few know what it really means.

The dictionary tells us;

Self-love | noun | Regard for one’s own well-being and happiness.

Now that can even seem vague and open to various interpretations. In fact, it’s taken me years to answer this question for myself. I’ve searched high and low, lived in Ashram’s, done six silent Vipassana retreats, travelled solo, lived alone in foreign countries, practiced many different techniques and approaches and I can say this, its discovery of a very different kind. It’s not an experience you are looking for, it’s a relationship with yourself. That can’t be found anywhere but within. Continue reading “Self Love for Alopecians”

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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