Comment

Comment by Catherine on December 3, 2013 at 1:11pm

Debs, I would love your fact sheet too (have sent you a friend request). Thank you so much! I have tried so many different treatments over the last year, and seen many doctors in the States, the UK and France. If useful for you all, I will happily summarize everything I have tried...

Comment by Kath UK on December 3, 2013 at 11:20am

Debs - great idea about the fact sheet.  I'd very much like one, please.  Have sent you a friend request.

Comment by Celia on December 3, 2013 at 7:55am

Thank you Carol for that info - I wasn't aware of some of that but it is good to know that things are beginning to happen !

Comment by Pam on December 3, 2013 at 4:16am

Fact Sheet - yes I would like one please!  Brilliant idea. To give to my local derm as well, also local trichologist and skin/hair clniic. They all say they are seeing more of the condition, and would like more information. I think that the more we make people aware of FFA the better, and the higher the chance of some research being done into why it occurs, and what can be done about it.

Comment by Celia on December 3, 2013 at 3:46am

Brilliant idea, Debs, well done ! x

Comment by Debs on December 3, 2013 at 3:40am

Any new ladies on here??? I have typed up a fact sheet on FFA to save you the time/effort of reading back over our past posts... please send me a 'friend' request so that we can exchange emails and I can send you the fact sheet as an attachment.

Comment by PamW San Diego, CA, USA on December 2, 2013 at 10:42pm

Jess, clobetasol is a topical cream that contains a steroid.  It is a foam that is put on your scalp and it is supposed to reduce the inflammation which is supposed to help with the burning, itching and discomfort in your scalp.

Comment by jess on December 2, 2013 at 4:17pm

sallylwess what is clobetasol?  is it an oral steroid?  I wonder if I should ask my derm for an oral steroid....

Comment by Jean on December 2, 2013 at 2:30pm

I also had an interesting chat with Dr T this afternoon and will be joining his research group.  He said that there was some conflicting research, in that one study involved using mice, who grew hair on man-made minor skin damage.  The second came from sufferers who had hair transplants following FFA.  The procedure caused a flare-up of the condition.  Dr T asked lots of questions around thyroid and HRT issues and feels that a lack of estrogen could possibly be a trigger but it's very early days and he doesn't want to make any assumptions. 

I'll wait for my saliva test.  Great that something's being done!

Best wishes - Jean

Comment by Celia on December 2, 2013 at 1:15pm

Debs - the link you sent had a  letter u in the e mail address you gave for Dr T - that is why it bounced back when it was used by some.

christos.tziotzios@kcl.ac.uk      Just in case anyone hasn't e mailed him yet - this is the address.   It's a difficult surname to write I almost had to do it letter by letter - I asked him the pronunciation - I still couldn't say it !

Thanks Debs for finding him - have you done the test yet ? x

 

 

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