Comment

Comment by Caro UK on November 21, 2013 at 9:31am

Re wigs. This is to let you all know my recent positive experience. I've just visited Wills Wigs, near Birmingham, and been fitted with a fabulous Ellen Wille wig in "Flame mix" that closely matches my own hair colour (which is coloured red) I had a NHS voucher so only had to pay £65 towards the cost. I knew as soon as I put it on it was right for me;  the change in my appearance was amazing. I had been feeling really depressed, hiding away at home, and only going out with a hat on as I felt old and unattractive with my hairline receeded and my hair so thin on top. My skin is very good but because of my hair issues I felt older than my age.  Anyway, I thought I have to pluck up the courage to wear this wig in public so go for it girl!  I was to attend a study day at work, so wearing  my own clothes for a change - normally I wear "scrubs" for work which makes me look like a sack of potatoes and no make up because it is too hot  - I put all my make up on and the wig. Felt VERY nervous but I needn't have worried - the response was fantastic. Everyone said I looked amazing! One person I hadn't seen for a few months didn't even recognise me and then she asked me where I got my hair done! Wow! I ducked out of answering but it felt so good! I'll be changing my photo soon to reflect new me.

Comment by Pam on November 21, 2013 at 5:48am

I looked at some reviews of needle rollers on the Internet, and there are also some warnings. Some people have suffered from damaged skin which has left permanent marking. Maybe it was incorrect use - but its as well to be aware of the possibility!

Comment by Jules UK on November 21, 2013 at 4:36am

Thanks for clarifying how to use the needle roller, Debs. I'll give it a try tonight. I have an appt to speak to Dr Tziotzios on Tues. It's gratifying to feel a part of something. Thanks for attending the CARF conference and giving us all the 'heads-up' on this research. Xx

Comment by Debs on November 21, 2013 at 4:25am

MICRONEEDLE ROLLERS.. it is known that when there is slight injury to the skin it encourages hair growth, so often people that have eyebrows tattoed (regardless of whether they are doing it for fashion and don't have alopecia or if they are alopecians) more hair grows in that area.  So, by using this tool we are trying to trigger this effect.  It also encourages more collegen production so it is anti-aging!!  Angelina Jolie does it on her face.  You can use it on bald areas with the hope that something might grow back there is no harm in doing that and use it on areas where there is still hair to encourage more hair to grow and preserve what we still have.  this tool just encourages hair growth.  So use it on bald areas and areas of hair.  I use mine on my face for anti-aging and my scalp for hair loss.  Use 2/3 times are week so skin has chance to repair itself.  You use your anti-aging creams on face after needling to boost effectivness.  You use your regaine or dermovate after needling to boost effectiveness.  OR you can just needle without any lotions/creams and it still works.  This is a tool we can use on its own or in conjunction with other treatments.  It is not a new treatment, Chinese medicine has used this effect for 1000s of years.

I have a low pain threshold but I can handle using this tool.  I was very pleased with the effect when I used it for the first time on tuesday, my skin went all pink and the blood flow increased in that area for a few hours afterwards.  I could also see/feel that my face cream was working much better when I applied it.  You can needle any part of your body but not eyelids.  

Ladies, this is a great tool to use for our faces... it has the added bonus it may also help to preserve our hair and encourage some regrowth. 

Comment by Annie on November 20, 2013 at 11:06am

Rita, I'm sorry I haven't  replied to your questions regarding Rogaine sooner.  I have been using a generic 5% foam version for over six months now - morning & night for the first 6 weeks, then every morning since then per my doctor's instructions.  I wash my hair every other day.  I put the foam on my wet scalp on the mornings I wash my hair, then style as usual.  It actually gives my hair a little lift at the roots, and my hair looks as clean & shiny as usual.  It does make my hair a little duller on the second day.  I've found that if I spritz my hair with a little leave-in conditioner on those days & use my blow dryer with a brush designed to increase shine (Name brand:  Ion - purchased at Sally's Beauty Supply in the US) for a minute or so, it brings back some of the shine.  As far as shedding when you start using Rogaine, yes, I did experience some.  This is supposed to be a good sign that it's working by stimulating the hair follicles to push out dormant hairs.  I noticed about twice my normal shed about two weeks after I started using Rogaine.  This continued for about two weeks and slowly tapered off and went back to my normal ffa shed by week six.  The initial shedding was scary, but I really didn't notice that my hair was thinner after my Rogaine shed.  I started sprouting new hairs in less than two weeks, and I can still see little tiny new hairs coming in.  Good luck to you if you decide to use the Rogaine. 

Comment by Jules UK on November 20, 2013 at 7:56am

Thanks, Liz. We're all so different. I've now got my needle roller and am trying to pluck up courage to use it. Maybe try it on a leg first.
Pam, I'm sorry you're disappointed with your hairpiece. Trendco in Bham also makes custom hairpieces and when I saw them when first diagnosed, they said that they could arrange a meeting with another FFA sufferer who had one to see how they looked. I'm not yet ready for that but maybe you could take them up on the offer? X

Comment by Liz on November 20, 2013 at 6:24am

Hi Jules. I have not had a biopsy. I lost a lot of hair very quickly, within 1 year I had lost several inches. My mum has had this condition for about 7 years and has lost about 4 inches. She has never used any medication. I have male pattern thinning of my hair as well and I think at some point my shedding took place very quickly ( I cant remember the name for this). I think that the hair that has grown back is maybe the hair that shed quickly, maybe? 

xx

Comment by Pam on November 20, 2013 at 5:32am

I had a long talk with Dr T yesterday, and am going to be taking part in his research. I am so delighted that more research is being done into this awful condition.

It is great that Liz has experienced some hair regrowth, it really does give us some hope! I feel full of drugs at the moment, and don`t know where or when it will end!

I`d love to know more about your hairpieces Kath, as I got one yesterday but when I wore it home my husband said it was appallling, and you could see the contrast between my own hair and the top piece so clearly it was obviously fake, and it looked too top heavy as well! At least he is honest, which is a good thing!! Do your pieces clip in, or are they taped on? Are they synthetic or real hair? I know it would give me more confidence if I could find a good one that just covers my front and sides, and feels lighter to wear than a full wig.

 

 

Comment by Jules UK on November 20, 2013 at 4:24am

Liz, just wondered whether you'd had a biopsy to confirm FFA? Mine was diagnosed without because the pattern was so typical, there was no need. Maybe you were the same. We're always told there's no hope of regrowth, and yet you clearly have some!! It's certainly given me a more positive outlook and I'm sure I'm not alone in that.
I've emailed Dr Tziotzios; just waiting for a reply. X

Comment by Kath UK on November 19, 2013 at 5:32pm

I've also contacted Dr. Tziotzios and will speak to him on Thursday.  I agree with Dee that it's nice to be able to do something to help research into FFA to benefit people in the future.

Liz - it's great that you've had some regrowth - long may it continue and I think you could be right about stress.  

Stress certainly could have been a factor for me (my hair loss began at the time when I was helping care for my mother who had dementia).   I'm not on any medication now except for Dermovate which I use only when I get a flare up.  The dermatologist I was seeing earlier this year told me that the hydroxychloroquine hadn't worked for me and the only other medications available carried the risk of side effects - which I don't want. ( I suspect she felt my age was a factor too).  Anyway I'm going to do the stress reducing bit like you, Liz, get on with my life, hope the FFA burns itself out and be glad it is nothing worse!  At least I've got my nice hair-pieces which have really boosted my morale.

All of you ladies who are trying the treatments - I'm rooting for you!.  It's only a matter of time before the doctors find a cure so hang in there.

 

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