You are right, people need to be informed of the specifics.
My older lost his hair when he was so young that it essentially made no difference. He has no memory of having a full head of hair. For about the first ten years I kept on hoping he'd finally regrow it all, as he'd lose most of it, get back some, lose a little, regrow a lot of hair. But he never had a full head of hair, and around the time he was 14 he lost all of whatever he had, and aside from some occasional random hairs that he shaves off, is full on Universalis.
My second son, because he didn't start losing his hair until he was ten, initially had a harder time adjusting. What helped was that about 8 months after the hair loss first started, we attended the NAAF conference. There's a guy there, Mike, who is the official "If you want to learn to shave your head, Mike will show you how" person. He took one look at my son (and all of the NAAF people already knew about him because we'd been attending conferences for years and I had gotten in touch when he first started losing his hair) and said, "Hey, I see you're losing your hair. Do you want me to help you shave it off?" To my surprise and pleasure my son agreed. And he was vastly cuter completely bald than with the mangy, patchy thing that he'd had.
So now I had two totally bald kids, 10 and 14 although both were small for their ages and looked at least two years younger. This conference was in DC at the Mayflower Hotel, right downtown. We took the subway a lot. So now I'm walking around with two totally bald kids. And when people see bald children their first thought is, "Oh, dear. Cancer, chemotherapy." Most of the time they'd be right, of course, but not with my kids. So we'd be out and about and I'd see people take in my two alopecians and see the look of horrified sympathy that came over them, as they thought, "Oh, that poor woman. Two of them!" And because I'm essentially a cheerful person, and because my sons were not in the least ill, I'd react with amusement. Then I could see them thinking, "And she handles it so well!"
I have many amusing stories connected to the alopecia. It's not a tragedy at all, and if you can't find humor in it, then that's too bad.
Oh, and in recent years whenever I've asked them if they'd ever want hair back, I get as far as, "Hey, if there were ever a cure for --" and they stop me right there with a strong "NO!!"
A few years ago I traveled to Boulder, CO, to watch my younger son play Ultimate Frisbee, and I had no trouble spotting him very quickly because of the alopecia. Another mom, searching the same playing fields, took at least a half hour longer, and it turned out her son was on my son's team. A whole lot of white boys playing frisbee all look very much alike. Unfortunately, very few non-white people play, although that will surely change over time. I hope so.
Among the things I learned over the years of attending NAAF conferences is that the worst thing you can do is hide and try to pretend you don't have alopecia. I'm not suggesting everyone should go around bald, but be reasonably open about what's going on. I'd especially see the parents of a girl with alopecia, who've gotten her into a wig, and then says nobody at all, certainly none of her friends know about it. But they get her excused from PE and she never goes on a sleepover. I feel very sad for those girls.
Hope all this is helpful to you and to anyone who reads it.
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For a lot of people, that's all they get, and often the hair spontaneously regrows, maybe to fall out again some other time. There is no way of predicting what will happen.
