Comment

Comment by Meme on February 10, 2014 at 12:52pm

I have just received an email from Dr Tziotzios ( the doctor from Guys hospital)asking if he could ring me to discuss medical history. I just wanted to check with you ladies that this is all genuine. I know it sounds silly on my behalf but you hear about so many people trying to get information over the telephone.

Comment by Meme on February 10, 2014 at 12:45pm

Thank you Pam and C for your very kind welcome. I would be interested in meeting up with you all. I am also very interested to hear more about your hairpiece. I have thought about wigs but ¾ of my hair is still fine and it seems silly to shave it off. You have certainly given me lots to think about. thankyou

Comment by Pam on February 10, 2014 at 9:08am

My hair piece cost £345 - quite a lot, as it was fine textured and wavy real European human hair, and custom made - so more expensive than an acrilyic wig, but less expensive than some human hair wigs. Every day I am grateful to whoever grew that lovely hair which I am now styling and wearing!!

Comment by PamW San Diego, CA, USA on February 10, 2014 at 7:43am

Hi, Pam.  If you don't mind, could you comment about the cost of your custom hair piece vs. a wig?  Thank you - don't mean to be too personal . . . .

Also, is there anyone planning on attending the CARF Patient Conference in Chicago, IL this April?

Comment by Pam on February 10, 2014 at 7:03am

Welcome to the group Claire and Meme! We are all in the same boat, and it is good to share feelings and experiences with others. My FFA has been ongoing for about 10 years, and I have tried all sorts of drugs, topical lotions and diets. I have now had a custom made hairpiece fitted, and my eyebrows tattooed,  which seems to be the answer for me at the moment, as at least my looks have been restored, which gives me so much more confidence in going out and meeting people. I will have to accept certain limitations (such as easy underwater diving and snorkelling!), but being able to just go out and walk on a windy day without worrying is a great bonus!!

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

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