AAAF Goes to NAAFCon2017

With AAAF South Australian Branch Manager Liz Bear.

  1. What’s your connection to Alopecia/AAAF?

I was first diagnosed with AA 34 years ago.  My eldest daughter also has AA as did my paternal grandfather.

  1. Tell us about the NAAF Conference

The NAAF Conference is held annually at various cities in the United States by the the National Alopecia Areata Foundation. People with AA and their families attend from all over the United States and some from Overseas.  This year it will be held in Miami, Florida.  During the 4 day conference, while different session are on during the day for attendees, NAAF organises a children’s camp so children with AA can meet others who are like them.  There can be around 500 attendees.

  1. Why do you want to attend?

I am very interested in meeting and forging friendships with other support groups.

  1. What are you hoping to achieve by attending?

There are also quite a number of sessions which I would like to attend to hear how others deal with issues we have arising all the time.  The highlight will be hearing Dr Angela Christiano speak and hear more about her research.

  1. What are you most excited about in attending?

I’m excited to be part of a large group of people with the same condition as myself.  When I was first diagnosed there was no support group anywhere in Australia.  I was continually asked by my wig supplier to talk to people who suffered AA and we’re having difficulty coping, but I never met them personally.

  1. What, if anything, are you nervous/worried about?

The only thing I am worried about at the moment is that we may miss a connecting flight.

  1. Have you been to America before? Is there anything else you’d like to do while you’re there?

Yes, I have been to America a couple of times, most recently in 2014.  I’ve never been to Florida so I would like to visit the Everglades and take in the atmosphere around Miami.

  1. What does Embrace Alopecia mean to you?

To me, Embrace Alopecia means being comfortable living with yourself & with your hairloss.  It may take some time but you are still the same person on the inside as you always were.  Looks aren’t everything.

 

Liz will be one of two AAAF representatives who will be attending the NAAF Conference in Miami, Florida. If you have questions you’d like to ask or have AAAF ask the expert speakers, please let us know in the comments. Be sure to follow AAAF on Facebook for live updates!

Life with Alopecia – Charlotte’s story

This is a story with lots and up and downs and bumps along the way. This is the story of me with Alopecia. This story all starts in Year 3.

Year 3 was a very up and down year for me. This is where my Alopecia story begins. In about the middle of the year, very close to my birthday, I remember this very specific time when my mum was doing my hair in the morning for school and she saw a little patch. She said to my dad what is this doing here or add least something like that. My parents decided to take me to the doctors. The doctor said don’t worry about it, but my hair kept falling out and it was hard not to worry about it!  My parents decided to see a different doctor about it they recommended that I see a specialist about it. Continue reading “Life with Alopecia – Charlotte’s story”

5 Ways to Manage Stress – Alopecian Edition

Before we begin, there is one thing I want to make absolutely clear: This article isn’t about help you lower stress levels in order to start hair regrowth. It’s about lowering stress levels in order to live happier and healthier.

Alopecia Areata is not caused by stress.

Reducing stress is not a cure for Alopecia Areata. Though some people find that their hair loss seems to be related to their long term mental and emotional states, research into this aspect has found little consistent data. Reducing stress does however assist in overall health improvement, and has been found to assist cardiovascular health, digestion, immune function and even skin appearance. The improvement to mood, sleep patterns, over all productivity and happiness also demonstrate the reducing and managing stress can be a vital step in an overall healthy lifestyle.

Continue reading “5 Ways to Manage Stress – Alopecian Edition”

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?”

Power of the bald – Power of me.

This is a struggle for power around accepting this path we are on, and indeed it is a path, not a curse, not a karmic debt or victimization that separates us from others. I see it all as an untying of the knots, a blessing and a valuable lesson on this journey.

We are all born and move through life tying ourselves in knots. Knots are formed through expectations; conditionings, beliefs and they form knots of fear, insecurity, difference and anxiety. We succumb to false identities and ways of being that leave us measuring ourselves against false images of what we should and shouldn’t be.

Continue reading “Power of the bald – Power of me.”

Raising Kids with Alopecia (from ex-kid with Alopecia)

When young kids and teenagers first present with Alopecia Areata, it affects the entire family.

It’s usually a highly emotional, stressful and even scary time. There are so many unknowns with this condition – why it happens, how it might develop, will treatments even work?

That’s why AAAF exists. I’ve spent the last few years involved with the largest Alopecia focused organisation in this country, first as a Youth Ambassador, then Support Ambassador and currently as Secretary. I’ve spoken with dozens of parents and kids trying to come to grips with this new diagnoses, and they’re all asking the same question: What do we do now?

Continue reading “Raising Kids with Alopecia (from ex-kid with Alopecia)”

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”

Powered by WordPress.com.

Up ↑