Comment

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

 

 

Comment by sallylwess on December 1, 2013 at 10:10pm

Debs, I did not get the email from you.  I have spoken to Dr. T.  I will be getting a saliva collection kit soon from him.  

Comment by PamW San Diego, CA, USA on December 1, 2013 at 11:57am

Hi, Debs. I got your message and I used your link to email him, but my email bounced. So, I went back to your original post and used that link and I was able to send the email. Have not heard from him . . .

Comment by Celia on December 1, 2013 at 4:09am

Hi Debs - yes it did come through ! I have also repeated the e mail address on here a couple of times too.  He didn't mention the saliva test to me but I have e mailed him my address.  I think probably people go straight to this part of the forum.  Hope your messages are opened.

christos.tziotzios@kcl.ac.uk

Pam W I was interested to read the newsletter - thanks to you and Debs. xx

Comment by Debs on December 1, 2013 at 4:04am

Hello Ladies, 2 days ago I sent an email to everyone i this group giving the email address of Dr Christos Tziotzios as this forum is a bit of a pain in the way posts disappear so quickly... can anyone please confirm did the email to the group actually work ?  Also can you all ask your derms to pass on his email address to other patients with FFA so he can have as much DNA to work with as possible.  XXX

Comment by PamW San Diego, CA, USA on November 30, 2013 at 4:36pm

Hi, I emailed Dr. Christos today.  Also, CARF in the US has a November Newsletter.  I am attaching it to this email.  Hope you can open and see it. 

CARF_Newsletter15_Nov2013.pdf

Good information - but I don't think there is anything we haven't heard or know.

Best regards to all.

 

 

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