Tashi and I have just completed four days in Washington DC attending the “Steps to Empowerment” conference.. in fact it was the 31st such event…..and our first!
I was surprised the National Alopecia Areata Foundation never utilized social media more to communicate how amazing this event is for “People” with Alopecia… During the conference I heard a man say… suffering with Alopecia… and I agree, it is an emotional disease that is devastating for adults, but especially children, teenagers & young adults!
I am going to volunteer next year and help with their social media, if we can get the word out, all the other people who are suffering with Alopecia might find a mentor and a family, so they know they are not the only person in this world with Alopecia… and can come together for support, friendship and a smile!… The conference will take place in Miami Florida… But we need t start Tweeting, Facebook, Instagram and everything else TODAY!!!
Here is a blog I found recently that my daughter wrote when she was just five years old..
The year was 2010…..when Tashi wrote this blog…
Today we are very blessed, my daughter Tashi asked if she could write a blog about growing up in Whistler with Alopecia Areata (AA).. What is that you ask?????
Alopecia areata is a prevalent autoimmune skin disease resulting in the loss of hair on the scalp and elsewhere on the body. It usually starts with one or more small, round, smooth patches on the scalp and can progress to total scalp hair loss (alopecia totalis) or complete body hair loss (alopecia universalis).
Over 6.8 million people in the United States and 147 million worldwide have, had or will develop alopecia areata at some point in their lives.
The type of Alopecia Tashi has is the rarest form of hair loss 1-2% “Alopecia Universalis”
Tashi was a three-year old child when we noticed the start of Alopecia, within six months she was completely bald – this is her story in her own words.
Hello my name is Tashi Kawaguchi and I have grown up in a small town called Whistler, but that is not what I wanted to talk about. I want to talk about how I lost my hair. Well here’s how it all started.
I was only three years old when I lost ALL my hair. Not one speck was even left. We had just returned from Hawaii and little patches of hair could be found on my pillow each morning. It started with just a little circle, but it kept growing… until I was bald.
It did start growing back the next year when I was four, and what do you know – I lost it all again. It was really heart breaking. I never knew anyone else who was bald like me. We bought a wig but I pulled all the hair in front out trying to keep it on my head… So momma bought me head scarves in every color.
People don’t think about how important your eyebrows and lashes are, but it keeps dust out of your eyes and when you’re swimming in a pool without lashes your eyes burn and it is hard to see. My eyes are always red. Sunlight is also extra bright.
I realized soon enough that there are far worse things to have besides AA, yesterday my mom showed me a video of a beautiful woman who flies planes and she was born with no arms; she said she was uncomfortable when people stared at her; I feel that way too, especially at the pool after swimming.
All my friends say they don’t think about me having no hair, they love me and I am beautiful with or without hair. Some people give me things like chocolate cake and presents because they probably think I have cancer and am having chemotherapy.
Christmas in Cambodia
When I was six years old my mom and friends at the Teddy Bear Daycare decided to raise $10,000 to help a small village in Cambodia grow a vegetable garden and a fresh drinking well .
This was to learn how other children in the world live and so I could appreciate where I lived. I saw videos and pictures of children living in a garbage dump and with arms and legs missing because they live in a country where war has been and bombs lay in fields until some poor child steps on one and it blows up.
My Auntie Michele bought me a new wig for Grade Four, I love it but yet I still walk the earth with no hair. I said I would give anything to have my hair grow back but it hasn’t. I’ve done Chinese medicine (wow that was some of the yuckiest stuff I have ever tasted before), rubbed health products into my scalp, right now I sit for 30 minutes under a heat lamp… all thanks to my Auntie Michele who keeps trying everything to get my hair to grow.
I don’t get to excited when a few hairs grow around my eyes or on my head because they have always disappeared. I still pray for hair too. Someone told me you lose one thing and get another. I am a great dancer and I can sing too.
Tashi…. (Now 14 Years old!)