What is Alopecia? An alopecia primer for you and people around you

If you have alopecia, you probably don’t need me to tell you what alopecia is. But if you have friends or family who don’t understand your condition, maybe you can send them this video! With this video they might see alopecia in a more positive light.

When my alopecia started at 10, my parents were so worried. Of course, they loved me and they wanted what was best for me. But I would’ve wanted my parents to be able to shrug it off better, you know? Because how they saw my hair loss affected how I saw it. If they thought growing my hair back was the most important, then that was how I saw it. And they did. And so did I.

We tried everything possible: DPCP, cortisone injections in the scalp, Chinese medicine, acupuncture, different kinds of creams and shampoos, taking enzymes…and more. I even had a tiny hammer with 7 sharp needles on it, given to me by my acupuncturist. I was supposed to hammer my scalp with it regularly. This thing drew blood! The only time my mom said no to a potential cure was when a friend suggested urine therapy, which was, drinking your own piss.

In hindsight, urine drinking is harmless (except for the emotional damage). It could be worse: A long time ago I chatted with a guy with alopecia who opted for cortisone injections at the hip, and eventually had to go through hip replacement at age 27. Whether getting your hair back is worth drinking piss on a regular basis, that’s your call. But I know for sure it’s not worth losing your hip over.

Let me just quickly go over what I talked about in the video. You probably already know all of this, but it may help you explain it to those who don’t know:

One in 50 people (2% of the population) gets alopecia areata at some point in their lives. It affects men and women equally, and its onset can be at any age in your life. I’ve met people who never remember having hair because it happened when they were 2 years old. I’ve met people who got it at age 55.

Alopecia Areata is an autoimmune condition. Your body’s immune system got confused and thinks your hair is not a part of you, so it attacks your hair. Basically, your body is allergic to your hair.

Alopecia Areata is divided into 3 categories: areata, totalis, and universalis.

Areata is the lightest form, only areas are affected. It comes in the form of circular bald spots on your head (or face).

Totalis affects your entire head. You’ll still have body hair.

Universalis affects your hair and your body. No hair is spared. It affects about 1 in 1000 people.

For most cases of alopecia (90% of the time) your hair will grow back on its own. Sometimes we think what we are doing is curing the hair loss, when in fact it could be just your body curing itself.

The earlier the onset, the least likely it is for the hair to grow back. If you get it at 3 years old, the chance of all your hair growing back and not lost again is slimmer. With that said, alopecia is always unpredictable.

There are many potential cures being developed. There are remedies too. I’ll talk about it more in a future video. I think real cure, one that has no risk of side-effects and is guaranteed to work, is to love your alopecia self. I’ll talk more about this in future videos too 😉