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Autoimmune disease

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Any fellow Alopecia Universalis/Totalis sufferers out there?

1 reply

ReadyShreddie · 03/05/2026 14:19

Lost all my hair a couple of years ago, out of the blue. Utterly devastating. I had great success with JAK inhibitor medication and it all grew back for about 18 months, but in December it all started falling out again and now I'm back to 100% hair loss.

Wondering how you cope with the summer heat and holidays? I have a couple of wigs which were extremely expensive and very well made but are still hot and uncomfortable in the summer heat. I'm looking at hair wraps and beanies, scarves? Any top tips or suggestions would be very much appreciated.

OP posts:
WordsearchKween · Yesterday 22:39

I'm sorry your treatment success was temporary, that must've been really hard to get through the loss twice.

I've just been diagnosed with scarring alopecia. Still in shock.

Just wanted to jump on here for any suggestions of how to potentially dress my head going forward.

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