Comment

Comment by MairiM on November 22, 2012 at 3:19pm

Would be great if someone can be brave enough to go on embarrassing bodies. Won't be me, though. At my age the less seen of my body the better!

Comment by Heidi Short UK on November 22, 2012 at 2:41pm

Hi everyone happy late Thanksgiving to our American friends!
Celia you say you are not sure of swallowing any medication, I just wanted you to know I have been taking my hydroxychloroquine sulphate 200mg since May with no problems what so ever, I take it with my breakfast and a multi vitamin! You have sounded a bit sad recently, keep your chin up, we all owe you a great deal by setting up this web site. Its a place we can come with questions and support. I hear the panic when people first join this group desperate for answers, confused, scared that all their hair is going to fall out! I know I was devestated I couldn't stop crying at first but now I am more excepting, I have tried everything and at the moment I'm ok ( I don't know how I'll feel next year when alot more will have gone!) I have got my hats for windy days, and I've got a few different hair bands if I'm desperate to keep my hair inplace.
There was one question that I would like you to ask Dr Harries 'has he had any luck in funding the data base for scarring alopicias, which he had talked about in his reply to me. I did reply to him by email but never had a reply back, perhaps I should have written instead.
Liz when i went to see my dermotologist the first time, my daughter came with me. It was one of the questions she asked him, he said FFA wasn't heredity, although other auto ammune diseases were. Also I went on the embaressing bodies website a few months ago and wrote on their wall regarding more info on FFA, I haven't had any reply though. Perhaps the more people who ask questions the more likely they would do a program on it! EVERYONE WRITE IN!!!!!

Comment by Liz on November 22, 2012 at 1:23pm

Hi. Is Dr Harries a private doctor? I cant understand why I was prescribed 8 weeks of antibiotics and 8 weeks of steriods when I have no irritation. I stopped both early (although safely!)Would you tell Dr Harris about the possible heredity factor because my mum has FFA to. My mum has no eyebrows. I on the other hand have lost half of 1 eyebrow! Im thinking seriously about contacting Channel 4 and asking to appear on Embaressing Illneses. Myabe I'd get some answers, and then again maybe not!
xx

Comment by Debs on November 22, 2012 at 6:52am

Hello All, Celia I am glad you are sorting out your brows, I will go along to this clinic in Chertsey when mine need a top up, had them done last November and they are still dark, have faded a little but it will be awhile before I need to touch them again. Went to a lovely Christmas fayre in London yesterday and had lunch. I wore a wig. My 2 girlfriends know about my FFA and saw me in a wig back in Sept. I wore a bob with a fringe, a Gisele Mayer, they both liked it. Nobody stared at me! A young woman working a a restaurant was wearing a very nice long wig herself, I knew because it was similar to a long wig I have purchased but my girlfriends had no idea she was in a wig and in fact my friend Sally commented on what lovely hair she had! Going to wear my wigs to several events in Dec to gain confiidence before going into them full time in Jan. Can't wait to hear Celia what Dr Harries says. Have a lovely week. Hope all the ladies in the USA had a fab thanksgiving. XX

Comment by MairiM on November 21, 2012 at 7:51pm

Rather belated Thanksgiving wishes to all of you celebrating today.
Celia - can you tell us where you found the new site that mentions Dr Harries?
Reading all your posts has been good for me as it makes me feel I am one of the more fortunate ones. I have no itching, flaking or redness, and I have lost only a small bit of one eyebrow. All I have is the loss of hair :-( and the characteristic pale skin. We have noted the variety of treatments we are getting, but I wonder if Dr Harries will have any ideas on why our symptoms vary so much also.

Comment by Judy on November 21, 2012 at 3:14pm

Happy Thanksgiving from me also. Even though we all have this crummy condition there are so many things to be thankful for so I am forgetting FAA tomorrow except being thankful for this group and realizing there are other women having similiar feelings.
I too am interested in the nutrition question.

Comment by KarenGinny - Iowa, US on November 21, 2012 at 11:32am

Jules, I would like to hear about the effects of diet and other supplements as well. Although I don't know if it would help me regain hair, if it would make my existing hair stronger that would be good. Happy Thanksgiving to everyone from the US! I am thankful that I found this group and that we all have a place we can come and talk about this condition with others who understand. Have a good day!

Comment by PamW San Diego, CA, USA on November 21, 2012 at 10:00am

celia, I have a question for Dr. haries. Dr. vera Price, who has done much of the research here in the US says that Actos can work for FFA. can you ask him about it. She says that is the only drug which has shown to stop the hair loss. The other drugs just control the itching, burning, etc.

by the way, the white flaking is not the cream. It is our scalp reacting to the inflammation. it is called scaling.

I know, it is not a holiday for you, but tomorrow is Thanksgiving in the US. So, I want to wish us all a Happy Thanksgiving. And to my friends in the UK, thanks!

Celia, also dont be upset after the tatooing. Your brows will be really, really dark. it is a shock after not having any for a while. Just be patient, they will fade. I just had a touch up last Saturday because they were so light.

Comment by Jules UK on November 21, 2012 at 9:39am

Bold - but hairy.... sounds good to me!

Comment by Jules UK on November 21, 2012 at 8:45am

Hi everyone. Celia, I hope Dr Harries is worth the trip. I've booked a travelodge for the night before my appt with him because it's quite early. The danger is that we pin too much hope on him. I'd be interested to know what he thinks about hair products - for styling or colouring. Should we avoid them or can he recommend any? Also, is there anything - such as supplements or particular foods - that might either aggravate the condition and be avoided, or help hair growth and be included in our diet? I'm just desparate to be doing something, anything! I'd dye my hair green if it helped!

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