Comment

Comment by Liz on February 19, 2015 at 3:13pm

Hi Jen

I lost most of mine within the first year-18 months after I noticed it going. It had probably been disappearing for a few months before I noticed. I have now had it for 2 and a half years and in the last year the loss has been minimal. When I was losing a lot I could pull on my hair and it would come out without me feeling it. Now I cannot do that at all and so I assume its not active.

Comment by Jen on February 19, 2015 at 3:08pm

thank you Sad. It sounds like a big expensive procedure but worth every penny.

Comment by Jen on February 19, 2015 at 3:02pm

Liz how much time elapsed between the start of FFA and the eventual minimal loss? I am trying to gauge where my FFA is at.

Comment by Sad in chicago on February 19, 2015 at 2:49pm

The topper clips in.....if you have it professionally styled and put together at a wig shop a "dressmaker" type person will sew in the clips so it fits at your best points.  There is a lace cap that the clips adhere to that also is where the hair is sewn in. Sometimes you can "ruff" up the hair it will attach to a bit so it fits better if the hair you are clipping it too is thinner.  I have two.  One real hair, very expensive, I wear every day, wash, style and color when it starts fading, and a synthetic one that fits a bit differently, and can be washed more easily and works for exercise, summer, beach, etc.  My hair stylist works with me and trims and shapes and colors my real hair so it all works together.  It takes a village!

Comment by Liz on February 19, 2015 at 2:46pm

Hi Jen

Mum lost most of it quickly and then it slowed right down. At first she thought that the visor she had been wearing was rubbing the hair off and for a few years she used to sit in the sun trying to tan where the hair had disappeared. It certainly wasn't getting worse during that time. She could never work out why it remained pale and wouldn't tan. Since then she says that she loses a few hairs here and there but nothing in comparison to what she lost before. She didn't know she had FFA until I was diagnosed with it and she realised that she might have the same thing. My hairdresser takes photographs of my head when I have my haircut. The difference between them is now minimal....This is why I wonder how any of us could ever know if the medication works. I have read a few people say that they have been taking medication and that they think it has slowed down their hair loss. My hair loss has slowed down considerable if not stopped altogether. Had I been taking medication I may well have believed that it was the medication which had slowed down/stopped the hair loss.

Hi Celia. Hope you are well :) Let me know when you plan the next meet up and I will try to make it xx

Comment by Jen on February 19, 2015 at 2:34pm

Liz and Sad,

Thank you for your responses. I started in 2010 diagnosed in 2012. I have not had a significant hairline loss in 2014. However I had an overall thinning which is still continuing to date. I have lost 1"-2" in different places along the hairline. I am considering a topper.

Sad, how do you attach the topper? I would assume that there is not much strong hair to attach it to.

Liz, did mum have hair line loss all of the 9-10 years? Or had most of that loss occurred early in the FFA period?

Comment by Celia on February 19, 2015 at 1:56pm

Debs - I can see you are online - hope to see you soon ! x

Comment by Celia on February 19, 2015 at 1:55pm

Hi Liz - I haven't been on the forum for a while but am thinking of trying to organise a spring get together - hope you might be able to come this time - hope all's well. x

Comment by Liz on February 19, 2015 at 1:54pm

Hi Jen. My mum has had FFA for about 9-10 years. She has never had any treatment. She has lost about the same as I have and probably nothing noticeable for a few years now. So, if  hers has burnt itself out she has lost around 2" in ten years. I have lost about the same amount as her plus 1/2 an eyebrow. My mum has no eyebrows but she lost them quite quickly at the beginning of her FFA. I imagine though that it might be different for everyone

Comment by Sad in chicago on February 19, 2015 at 1:43pm

Good question.....I will say that mine seems to have slowed down considerably, so I am able to maintain the topper I wear while having the back and sides of my own hair blend in.  What is left of the sides around my ears does seem to grow too and requires trimming along with the back and bottom of my head.  

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