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Comment by Kathyt on March 30, 2016 at 7:36pm

Devastated! Have been crying all day. Just diagnosed today with FFA. No biopsy. Lost my brows in 09 and have been battling with a receding hairline for several years. My derm and rheumatoligist told me it was aging, hormones and nothing could be done. Bought a laser hood 2.5 years ago from a hair center that said they could regrow my hair, nada. Today I went to a different derm and she said right away she knew it was FFA just by looking at my scalp and my symptoms. Gave me several scalp injections of Kenalog today and clobetasol started. Back in a month for more injects. The meds sound very scary but so far nothing has worked.  Daughter just got engaged and I'm so afraid I'll have no hair by the time of the wedding. Where do I start with all this? I'm overwhelmed. 

Comment by Debs on March 30, 2016 at 12:15pm

Guy's hosptil need a total of 1000 blood samples from women in the UK with FFA, if they do not get 1000 samples they research will not have enough evidence to make meaningful comparisions...

I gave my blood sample today (30 March 2016).

If you don't live near Guy's you can give a sample of blood at a clinic locally to you and they can forward it to Guy's.

It is now urgent for Guy's to have more blood sample to analyse.

Please if you live in the UK contact Dr Tziotzios

christos.tziotzios@kcl.ac.uk

Thank you.

Comment by Wyobalance on March 28, 2016 at 1:26pm

Hi Maz, this is ongoing trial and error.  I've ordered a 4x4 from Hairdirect.com.  It costs quite a bit more than the topper you got from China ($500 range for longer hair, less for shorter hair) but I have already matched my hair with Hair Direct as I currently cut and tape litte "fillers" in my bare spots.  The piece I ordered is not a "topper" but just a square 4x4 lace base, so I will need to work it into a topper if possible.  I'll let you know if it works.  A $500 trial & error is no fun.  I also am in touch with someone that uses a professional topper that she pulls her own hair through.  It is super nice.  I think that was $3000+  :(.  

Comment by Maz on March 28, 2016 at 5:18am

Hi Wyobalance, Well, I received the topper from China. It was informative and I'm glad I got it even though it isn't usable for me. I've learnt that it is hard to pick the right colour and I didn't. I've learnt that synthetic hair from China may not look natural enough. It's not bad but it's too shiny to blend with my hair. On the positive side the style actually would work quite well for me and would be quite comfortable. I won't be looking for a full wig, that's for sure. I now know that when I can no longer bring enough hair forward to cover my band of white skin I will be looking for a topper, most likely made with human hair, and I'll be very careful about colour and shine. I can see some more trial and error in my future.

Comment by Kikibob on March 27, 2016 at 1:41pm

Hi All, I have a question for those of you using Clobetasol.  I was prescribed the foam product and the RX said to use it for 14 days.  I was getting some soreness/tenderness and dry mouth too from using it, so I stopped after day 14. It is now 5 days later and I still feel sore and the itchiness seems worse.  Are you using Clobetasol continuously, i.e. are you using it longer than 14 days at a stretch?  Thanks for any advice!

Comment by Wyobalance on March 19, 2016 at 3:34pm

Maz, thanks for your online info for the hairpiece.  This is lots of trial and error, isn't it.  I'd like to hear how it goes for you when you get it.  

Comment by Liz on March 19, 2016 at 1:08pm

Hi Denise. I too have an intralace system. I've had mine since December and it's amazing.
X

Comment by Maz on March 19, 2016 at 9:28am

Hi Wyobalance, I ordered the hairpiece on Ebay (item no. 361107015975). It takes quite a while to get stuff from China but it usually gets here. For the price I paid I gladly take that risk. I also don't really expect to get something that will do the trick for me. It is just research and something to play with. I don't even feel brave enough to enter a wig shop at present so this is sort of a delaying tactic on my part. When it eventually turns up here I'll let you know what I think of it.

Comment by DeniseC on March 19, 2016 at 5:48am

hi - I live in England. For a long time I got away with the hair forward approach, but got to hate it, especially on windy days! So two weeks ago, I bit the bullet and went to Lucinda Ellory's clinic (she has clinics in the UK and USA). I now have hair! It's called the Interlace System and essentially  is a fine web that fits on your problem areas, with natural hair threaded through. MUCH better than a wig, and very realistic, but not cheap.

However, for me, it is  absolutely worth it. I will have to go back every six weeks or so for the system to be tightened (as your own hair grows it pushes the web up slightly), and every two years will have to have it replaced, but for me this is the best solution I could find and is excellent. People keep asking what I have done to my hair - new cut? New colour? No one (other than those I have told) has apparently realised what I have had done.

I know Lucinda Ellory is not in Australia, but I do think that they are the sort of place where if you emailed them and asked if they know of anything similar, they would respond. Cannot praise them enough. When I eventually plucked up the courage to go for a consultation I came away feeling my (our) condition was completely normalised. Unfortunate, but that was all. Not something to feel embarassed/ashamed about.

As you can tell, I am mighty impressed.

Good luck to you! And you WILL find a solution. You will.

Comment by Wyobalance on March 18, 2016 at 9:50pm

Maz - Can you share the website from which you ordered the topper from China?

Does everyone know about the Carf patient/doctor conference in New Orleans June 4 & 5.  It would be good to have lots of us there to share stories and what works for us.  Register on the CARF website, www.carfintl.org.  I'm a CARF Patient Outreach Volunteer and would like to meet you!

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