Comment

Comment by ET on December 4, 2013 at 2:55pm

Hi,

I've been reading the comments and I'm behind the curve.  Who is Dr. T?  It might be interesting to get into this study and my sister and I both have FFA.  I'm getting tested but it's pretty obvious.  Also how would I get a copy of the fact sheet.  Thanks for your help.  I don't even know if I'm posting my questions in the right area.

 

Comment by PamW San Diego, CA, USA on December 4, 2013 at 10:12am

Just spoke with Dr. Christos - thanks so much for making this possible. I don't think we will see a cure for a very long time, but it feels good to possibly being of some help for the future. If there is a genetic predisposition, I hope that a cure can be found for our daughters.

One interesting thing: I told him that when I woke up my scalp was calmer and became more irritated as the day progressed, which made me wonder if there was a food trigger. He said it was good thinking, but what they know is that the body's natural steroid levels are at its highest in the morning, and peak about 9:00 am. This is why people with other autoimmune disease have like asthma have more attacks at night. Makes sense to me, because I noticed that by the end of the work week, when I am more tired, my scalp hurts more. I am thinking, plenty of rest and more physical exercise (yuk) would elevate our ability to lower inflammation. Just my thoughts . . .

Comment by Debs on December 4, 2013 at 10:07am

debs-007@tiscali.co.uk

Please drop me an email and I will send a factsheet to give you website addresses and an overview on FFA, drug and non-drug options, tattooing, wigs - where to buy, how to wash/cut them etc..

Comment by Debs on December 4, 2013 at 10:02am

Thanks Pam, I have put the CARF website details on the factsheet, it is really intended to point people to the right places online with website addresses etc.. plus info I have got from ladies on this site and derms I have spoken to.  It is a starting point for new ladies.  CARF is a fantastic resource and their London patient meeting last month was terrific.

Comment by Alice on December 4, 2013 at 8:37am

ET, you can get a list of dermatologists in your area via the CARF website. Good luck!

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?

 

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