Comment

Comment by Caro UK on May 15, 2013 at 6:29pm

Celia, thank you so much for hosting a great day. It was lovely to meet everyone X

Comment by Heidi Short UK on May 15, 2013 at 5:13pm

Thankyou Celia for making it such a lovely day. I've just got back from a meal with the family to celebrate Jamie's birthday. I had a lovely time and it was so nice to meet you all. I've shown my family the pictures of us today and they all agree there is no way that any one looking at us would think we had a problem with our hair! Thankyou again Celia you are a special lady.

Comment by Heidi Short UK on May 15, 2013 at 4:58pm

Comment by Jules UK on May 15, 2013 at 3:35pm

I'm glad the cake was OK. Haven't tried that recipe before -it's one of lovely Paul Hollywood's. I'll sort it out and email it to you soon. Thanks again, Celia. Just busy looking at barn conversions for sale...... Xx

Comment by Celia on May 15, 2013 at 3:31pm

It was lovely to see you all. We shall get through this little problem by being positive - sorry I wasn't soooooooo positive all day. You all looked great - we shall do this again in the Autumn - and I would love it if you were all able to come here again - Heidi - I think yours was the longest journey - or - the most time consuming - but thank you all for making a huge effort to get together. Liz - sorry not to see you today but we hope to meet up soon ! Jules - need the cake recipe please ! Martyn loves it........ In order to use the e mail here you need to invite me as a friend. Otherwise I think most of you have my Hotmail. xx

Comment by Jules UK on May 15, 2013 at 3:06pm

Yes, thank you Celia. You made us all feel so welcome! It was great to meet up with other ladies who have to put up with this FFA. And you all looked so good. X

Comment by Debs on May 15, 2013 at 2:19pm

Celia, thanks a million for your hospitality and a great get together today. It was lovely to meet up with you again and have the chance to meet some of the other ladies from the UK.

Comment by PamW San Diego, CA, USA on May 15, 2013 at 7:24am

I am sending a link to the latest CARF newsletter. This is the research organization for Cicatricial Alopecia. There are many interesting articles. If you are not a member, I urge you to contact the organization and register your name. It is free and private. The doctors have been calling this a rare disease, but more and more people are getting diagnosed. They are an international organization.

Here is the link.

http://www.carfintl.org/newsletters/carf-newsletter-2013-05-01.pdf

Comment by christiekd on May 14, 2013 at 8:23pm

Thanks Robyn for your good news. I think it is a good ideas as well to not let FFA take over our lives. Furthermore, I think trying not to stress too much over it (and other things) is important too. I am a very type A personality so it is hard for me sometimes to let the little things go. But I find that if I can roll with the punches, I don't get the burny, itchy feelings on my scalp so much. Plus, I try to remember that other people have medical conditions a lot worse than this. So I try to do a lot of positive thinking along the way. It can't hurt at least.

Comment by Debs on May 14, 2013 at 12:06pm

Robyn, thanks for keeping us all informed. Very good news that your FFA has calmed down and also very reassuring about the long term use of this drug. XX

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