Alopecia universalis or alopecia areata universalis is a medical condition involving rapid loss of all hair, including eyebrows andeyelashes. It is the most severe form of alopecia areata, with an incidence of .001% (1 in 100,000).
I have been “blessed” with the Alopecia from the age of 10. It started off as Alopecia Areata (spots on the head) and it turned into Totalis by the 13th year when all my finger, arm, leg, knee, and even toe hairs fell off.
Growing up with this condition was not as fun as it could have been. I seriously looked like I had cancer, it was not a good look, especially when I didn’t deserve the sympathy I was getting, I was totally misinforming everyone! I wasn’t dying. I was just balding, everywhere.
Now let’s look at this condition from a child’s point of view. Mom and Dad and all the doctors are baffled! Clueless! There could be cause, 5 different ones, only one can really be pegged. Stress. I grew up in a very stress inducing environment. Let’s just go with that. More stressful than a normal 10 year old should ever experience.
Now back to being a kid. Kids are mean, that’s a given. Adults are quiet, they don’t discuss what they don’t understand. And it was the early 80s, thankfully I didn’t have to waste time on my hair and product and all that morning pain in the buttness. But the fluorescent colours and the tights and baggy shirts… oh man, no wonder the humour of having no hair didn’t stand a chance!!
Let’s fast forward a few years. Junior High. I was going to UofA hospital, PUVA treatments. Ultra violet radiation treatment 3x a week. This treatment pretty well wiped out all the rest of the air I had on my head. It was supposed to promote hair growth but it instead killed all follicles in it’s wake. 15 years later I find out that it didn’t work. Research flop. I figured as much.
Puberty, wow, that was tough! Boys are so mean. Teenaged girls even meaner! No one wanted to date the bald girl. That’s okay. I didn’t need to date anyone at that time, we think we’re so stinking smart as teenagers, ha!
Adulthood. Well Universityhood. I wore a velvet ball cap. I had regrown my strand of hair that came out the top of my head that I had cut off in 9th grade. It was 1/4 thick and braided. I looked like Jet Li in the old kungfu films. People thought I was all punked out. My friend Chris said when he first overheard me tell someone how to get a golden Chocobo, his thoughts were, “She’s cool and she races Chocobos! Must follow her!” Life in university was pretty awesome. I would relive it anyday!
Before I started classes in University, I tattooed my eyebrows, they weren’t coming back and I couldn’t guarantee that my eyebrows were level drawing them on at 6am for an 8am class, hell no! Plus by the end of the day in high school, I had rubbed one brow off already! Great, now people will think this punked out chick is also high as a kite, she can’t even be bothered to draw her other eyebrow! When it was frigging Math class that did it, I rubbed my brow off trying to wrap my brain around quadratic equations.
So now, brows been tattooed for 15+ years, and I wear wigs, all lengths and colours of them. Like I say, some people have shoes as far as the eye can see, I have wigs. Windy days are my enemy! Winters in Alberta were too cold, now I know what a Sphynx cat feels like! I don’t go to mosh pits no more. Hair’s too expensive to lose. Roll play is so much fun though!! I also have a very dirty comment that I share amongst others with plenty of drinks that make us alopecians the new wonder of the world. Haha!
That’s all for now, I’ll probably post how pregnancy changes everything… hair loss becomes hair growth and lashes!! But that’ll be for another day.