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Comment by Celia on February 9, 2014 at 3:20pm

Meme and Claire - there are a few of us in the SE of England..  We have had a couple of get togethers.  We would like to have another in the spring.  This will be at my home - just off the M40.  It would be lovely if you could join us.

Celia

Comment by Meme on February 9, 2014 at 1:49pm

Thank you for your reply Claire. When the hospital left me undiagnosed the condition wasn’t too bad. I had only lost about 1cm so it was not so noticeable and easy to live with. Of course it’s a different matter now and when people talk to me it’s my hairline, or lack of it, they stare at. It distracts them. When that happens you know it’s getting bad.  I have, up to now, just sat back and excepted it but reading some of the other ladies comments and hearing about their treatments is making me think that maybe something can be done.

Comment by claire on February 9, 2014 at 11:19am

Hello Meme,

I have just found this site as well it is very comforting to know others are in the same boat. I live in the South East of England and see a dermatologist called Dr Felton.Recently my symptons have beem worse-hairline really itchy eyelashes falling out so on friday I had a steroid shot at my GP's. I think I am feeling slightly better.It took me a long time also to be properly diagnosed and I still feel it is all a bit hit and miss with what to do long term.

Claire.

Comment by Meme on February 9, 2014 at 8:36am

Hello

I am a new member

My hair has been eaten away at the front for the last 10 years. It started with my sideburns and I have now lost 2 inches off the front hair line. When I first noticed something was wrong I was sent to my local hospital but they didn’t have a clue. Eventually told me that I had a rare form of alopecia and there was nothing they could do.That was over 8 years ago.  Imagine my amazement and delight when I discovered your website as I have never seen or spoken to another sufferer before.

I live in the east of the uk. Can anyone recommend a good  doctor or hospital that will attempt to help? 

Meme

Comment by MJ on February 6, 2014 at 4:49pm

Claire, not sure where in the states you are, but if you are anywhere near the Cleveland Clinic, i would highly recommend going there. Dr, Bergfeld is a hair loss specialist and has experience with FFA.
MJ

Comment by claire on February 6, 2014 at 4:31pm

Thanks Terry for the reply. It seems that alot of the sufferers are in the USA, are you based in the UK. I think I have had this contition coming on for years. The first thing I noticed was my eyebrows thinning-they have gone completely now but I have had them tattoed which is great. I feel disappointed that little is known about this condition. It took the doctors and dermatologists nearly a year to make the diagnosis. It seems so obvious to me know!! Kind regards Claire.

Comment by claire on February 6, 2014 at 4:05pm

hi Terry,

I have been taking hydroxychloroquine for about 5 months. Initially I felt better but now my eyes stream every day and are very watery and sore. I am going to see my doctor tomorrow. I also had my eyes tested and the optitian refered me to my GP. I had blood tests and all was ok.

Just found this site and it is so interesting.

Claire

Comment by Brenda, IL US on February 6, 2014 at 10:01am

Celia my doc gave me a paper that i keep on my bathroom mirror and i check my vision daily.  There is a white dot in the center of a black square with vertical and horizontal lines creating little squares.  You cover one eye and view the dot from 14".  If any lines or squares are distorted, irregular, or wavy or if a blind area appears stop the plaquenil and see your eye dr.  A friend of mine on plaquenil for lupus had this happen but her vision returned to normal.  She cant take the drug anymore.

Comment by Celia on February 6, 2014 at 9:17am

Brenda - I do get that occasionally esp noticeable when driving.  How are people having their vision monitored.  Mine was just done by reading from a card in much the same way as when one goes to the optician - is there any other way that this is done ?

Comment by Debs on February 6, 2014 at 6:11am

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Ladies that are using a holistic approach may find this Worksop of help

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