Comment

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!

Comment by Maz on March 8, 2016 at 9:29am

Well Gai, Don't be deterred by that sort of dematologist. But in saying that I think I understand their attitude.  So far, it seems that what we have can't be cured. They don't think that they can do anything for us so they dismiss us. Not fun. My daughter hasn't, so far, looked into any sort of hairpiece. She even pulls her hair back into a bun or ponytail. I bring my hair forward to cover the bald strip and I think that's the best solution while it works. When/if that stops being effective a topper may be enough. I think a wig would be overkill when there's plenty of good hair from behind the ears. I have looked at toppers on the internet and have ordered one from China for a less than five dollars that looks pretty much like the expensive ones. I don't expect it to be right for me but I want to get more information before I have to work up the courage to go to a wig shop and try their solutions. Medical wigs or hairpieces are going to be expensive.

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