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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Living with Alopecia – Linsey’s Story

My alopecia story started when I was a toddler. There are pictures of me with my fine, blonde hair all curly and cute—and then a patch of baldness.

Growing up I had patches on and off.

No one really talked about my bald patches; even my parents were pretty tight-lipped about it. Maybe because a doctor had said, ‘I would just grow out of it’. Well, I didn’t.

When I was twelve, I started to lose my hair in earnest. Continue reading “Living with Alopecia – Linsey’s Story”

Carlo Napolitano

Carlo Napolitano is the newest committee member to join the AAAF team. The former Head Coach of the Italian National Rugby team has had Alopecia Areata almost all of his life and attributes many of his personal successes to his experiences growing up with AA.

“Although it was tough growing up, I never used my Alopecia as an excuse to not achieve. I failed many times but I used the failures as a lesson on how not to do things. With or without hair we are all capable of success. Negative energy creates nothing, positive energy creates champions. Be a champion!!”

Continue reading “Carlo Napolitano”

Kokoda17 – Greg’s Story

Greg is AAAF’s Branch Manager in Western Australia. Over his many years with AAAF, he’s been a driven and passionate champion of Alopecia Awareness and support for people living with the condition.
His latest project, Kokoda17, is an awareness and fundraising challenge for himself and a team of other dedicated individuals from our community. On Sunday the 13th of August, they begin the journey of a lifetime – tacking the Kokoda Trail in Papua New Guinea. They’re taking on this 97km of rough terrain and poignant history to help improve the lives of people living with Alopecia Areata.

Already this amazing crew had met their first fundraising goal of $10,000 toward support and research into alopecia. They hope to reach the $15,000 mark before they return from this grueling trip. You can help them help kids and families living with alopecia by donating here.

We sat down with Greg during his preparation for this impressive journey, to discuss what inspired the idea and why he took up the challenge.

Continue reading “Kokoda17 – Greg’s Story”

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”

On Puzzles

Everybody you meet has a puzzle.

Your puzzle is different to mine. Mine is different to yours. Mine may be really big and overwhelming and complicated. Yours may be small and for the most part simple, or vice versa.

These puzzles represent our emotional, mental and physical selves. Your wants and needs to survive. Your situation. Your history. Your future path.

It is your puzzle and yours alone.

 

For a really long time, I have tried to solve other people’s puzzles. Continue reading “On Puzzles”

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. Continue reading “AAAF Goes to NAAFCon2017”

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”

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