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Alopecia - how to deal with it

6 replies

Knotter · 02/02/2014 13:24

I have something called frontal fibrosing alopecia. This is a type of hair loss where the body is attacking itself (an auto-immune condition) and the follicles are scarred/dead and the hair can never regrow. It makes your hair recede from the front, quite like male hair loss. I have completely lost about 2 inches of hair from the front and sides of my head. I also have totally lost my eyebrows, have sparse eyelashes and have no hair on my arms or legs (there are some plus points!)

I don't really want to put up a photo, but here's a woman with a similar level of hair loss here found randomly on Google, so hopefully not invading anyone's privacy. There seems to be no effective treatment in my case. I have covered it up as best I can with a fringe taken from far back, but sooner rather than later this is going to look ridiculous!

Would you give up now, cut remaining hair short and wear a wig? Where is a good place to go for a good wig? Is a real hair wig best? How do you deal with having to explain to all and sundry about what has suddenly happened to your hair? Dh doesn't understand, he says the wig I have got is a 'mop' (too full compared to the normal me) and he thinks I look fine as I am. He prefers a thinner hair look rather than 80s bouffant style!!

OP posts:
CMOTDibbler · 02/02/2014 16:46

My friends dd has had alopecia for 7 years now - she's 13 and has no hair at all. She has a few wigs, but her 'best' one is real hair as it can be washed and styled like normal. She does go bald quite a bit too.

The main thing is getting your wig cut and styled by a hairdresser who knows what they are doing with wigs as it makes them look much more natural. Mynewhair trains hairdressers and has a list of salons, but good wig shops would be able to point you in the right direction.

Knotter · 02/02/2014 19:32

Thanks CMOT, how difficult for your friend's dd. I will have a look for local wig specialists :)

OP posts:
FannyFifer · 02/02/2014 19:34

My friend has alopecia and gets a prescription from her specialist for wigs, they are fab real hair ones,think she can get x2 a year.

Knotter · 02/02/2014 19:48

Thank you, the GP did mention this as a possibility. I suppose I'm not sure whether my hair is quite bad enough yet to go on to a full-time wig..... They are itchy and hot in summer.....

OP posts:
Naicecuppatea · 03/02/2014 09:54

I'm so sorry and can sort of sympathise. I have female pattern hair loss which is an overall thinning everywhere, and worse on top of my head. It has progressed very quickly over the last year and I am wondering also what to do for the best as the treatments I am trying don't seem to be helping.

I would try a human hair wig if you feel ready for it, I think they can be thinned out so they look as natural as possible. Maybe build into wearing it gradually, and see how you feel, you want to of course feel confident and comfortable in it.

CMOTDibbler · 03/02/2014 10:05

If you don't want to go full wig, then you could look at a clip in fringe that can be worn with a headband to cover the recession. I've seen ladies on chemo who don't fancy a wig wear them with scarves and they look really nice

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