Comment

Comment by PamW San Diego, CA, USA on December 3, 2013 at 8:51pm

Debs, the CARF website has a FAQ page and a page that outlines the drug protocol if that will help you with your fact sheet. So nice of you to do this for the group.

Comment by PamW San Diego, CA, USA on December 3, 2013 at 8:47pm

ET, please go to:

Carfintl.org

Send them an email because they have a list of all the doctors that specialize or know about FFA and LPP. They will give you referrals.

Comment by Liz on December 3, 2013 at 5:10pm

Hi. Tomorrow I have an appointment with Dr T at Guys hospital. He has asked to see me, my mum (who also has FFA) and my son. I'll let you all know how we get on.

Jess I took the oral steroid prednisolone. It's difficult to say if it made any difference because there is no particular pattern to this condition but it did make my skin lovely which led me to believe that it probably minimizes any inflammation in/on the body.

xx

Comment by Brooke on December 3, 2013 at 4:44pm

I'm not sure how to reply to Deb directly about the FFA fact sheet you have developed but I would appreciate a copy.  Thanks very much for putting it together, Brooke (brooke@peak.org)

Comment by jess on December 3, 2013 at 3:41pm

has anyone that tried the oral steroid prednisolone felt that it made a difference?

 

Comment by ET on December 3, 2013 at 2:41pm

Hey All, I'm wondering if anyone knows of a doctor in the Denver area that specializes in FFA.  My sister who lives in Portland was diagnosed 2 years ago.  I think I have FFA as well as my hair is receding.  

Comment by Maddy, California, U.S. on December 3, 2013 at 2:35pm

Debs, I would also love to see your fact sheet! I think I sent you a friend request...or at least I tried :). I have a call set up with Dr. T on Thursday...so hopefully can be part of the research! Thank you!

Comment by Jules UK on December 3, 2013 at 2:31pm

Debs, it's a fantastic idea to create a fact sheet. Would you email me a copy, please? I've managed to opt out of email alerts somehow. I thought it had gone quiet! New eyebrows this week, at last. X

Comment by Catherine on December 3, 2013 at 1:46pm

Hi Rita, Of course, I will be most happy to. I really have tried so many different options and seen numerous doctors, some of which have published a lot on LPP (I have two forms of LPP: FFA as well as the 'classic' LPP elsewhere on my head; my FFA is most obvious and active). It has been such a journey. I am travelling at the moment but will write a detailed account of all the treatments I have tried, length of treatment etc.,  as soon as I am back home in London in a few weeks. It is not a happy ending unfortunately as nothing so far has seemed to work...

Comment by Rita - Canada on December 3, 2013 at 1:24pm

Catherine, I for one, would be very interested in the treatments you've tried and length of time you tried each as well as the country you received the prescription from.  I am sure we would all very much appreciate this information, please and thanks.

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