Susie, Saturnian, Darthquilter (susies_crafts) wrote in alopecia_heads,
Susie, Saturnian, Darthquilter
susies_crafts
alopecia_heads

growth and loss

Hello! I haven't actually posted on here in a while. I wanted to know if anyone else deals with sort of yo-yo hair loss. Its been like 8 years that I have had alopetia areotis and it seems to go in waves. It will fall out slowly to the point that I pretty much bald. Then it will stay like that for a little while and then start to grow back in patches. It will keep growing till I almost have a full head of hair and then start to fall out again. I am on my second cycle of this. I had almost a full head of hair for almost a year. That was like wow! And now its falling out again. Its almost to the point that my hair wont cover the spots and I will have to go back to scarves and wigs.

Its like I know the hair isnt going to last but I still get attached to it and get depressed that it is falling out again. It almost feels like its taunting me. As soon as I get used to having no hair it starts to grow back and then when I get used to the hair it falls out. I am so tempted to shave it off but I have this stupid attachment to it... There is a back and forth battle in my head about what to do with it. But it has been fun to have pony tails and shoulder length hair, when my hair does grow it grows really fast. But now I find myself not being able to fully cover the spots up so I will have to do something about my hair soon.

Do any of you guys find yourself in this situation? When I do shave my head it looks all patchy does anyone have any tips about how to make it look less patchy?
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My son (he's only 5, which is why I'm here in this community and not him) lost all his hair, eyebrows, eyelashes, leg, back, arm, anywhere there was even little tiny hair, it's all gone. Of course that goes for the hair on his head too. This started when he was 3 and a half. By the time he was 4 it was all gone. Sometimes we see little white peach fuzz growing on the top of his head and we get our hopes up that it means his hair will grow back and .... nothing. the peach fuzz goes away. A few months later we'll see it again. And then it goes away. It never grows out, it never lasts.
I've had AA for two years and it totally goes in cycles. My first cycle, about 70% fell out and then grew back. And then I was good for a month and it started falling out again.

I've gotten to the point where I think my plan is to keep wearing a wig unless my hair has fully grown back for a LONG time. I miss my long hair and to not confuse the people at work (because I was wearing long wigs until my hair grew back), now I have to wear shorter wigs to 'grow' it out. Because when it started to grow back, I was getting attached too and it is frustrating!!

I don't really care if people know, because then they'd leave me alone about it. The cleaning guy at work keeps asking why my hair is always different lol and it gets annoying.

I don't shave my head because for the most part my top middle section hasn't ever fallen out yet, so I just keep it really short. Luckily my cousin is a hairdresser and cuts my hair enough to make it presentable-ish when I'm not wearing a wig.

Good luck ♥