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Comment by Meme on February 20, 2014 at 8:51am

Hello Claire

Sorry for the late reply, had to take daughter to the eye clinic. I live in Suffolk near Bury St Edmunds.

Will look into the products mentioned. When I met Dr Chris he took a file of blood to check my iron and other vitamin levels. It will be interesting to see the results.

meme

Comment by Jules UK on February 20, 2014 at 7:00am

I use Superdrug's own brand Hair, Skin and Nails supplement. The ingredient list is identical to that for Perfectil which is far more expensive! Dr Harries said that any supplement should contain biotin, otherwise he didn't particularly recommend anything. I haven't noticed any change in my nails, but that's probably due to the perverse nature of FFA rather than extra vitamins.
I've had notification that the 1st steering group is to meet in the last week of April, with a telephone conference in March. I don't yet know what the agenda will be but may be asking for comments in the near future.

Comment by MJ on February 20, 2014 at 6:58am

Regarding skin and nails, my derm had me start taking Vitaline biotin forte witg zinc, instead of the biotin 5000mcg tabs i had been taking. My nails have actually looked pretty strong.

Regarding the various studies out there, is anyone looking at common medical histories among FfA patients? For example, I have been a lifelong seasonal allergy sufferer and have taking antihistimes most of my life. Also, took way too much omniprzole for acid reflux in the year prior to diagnosis, also was on alot of antibiotics/flucanazole in the year prior. My thought was, if our extensive histories was put into a database, would some, one comonality pop out? MJ

Comment by Celia on February 20, 2014 at 6:22am

Skin Hair and Nails by Holland and Barrett - bought on the internet.  Naturally inspired whatever that means - I bought it in their 'penny sale' where you buy one and get another for a penny (allegedly !).

Comment by claire on February 20, 2014 at 5:55am

Hi Meme,

I am not taking any supplements other than Calcium and Vit D as I have weak bones- maybe I should start taking one!! Where are you based Meme? I live in East Sussex.

Claire.

Comment by Meme on February 20, 2014 at 5:41am

No problems, 2 invites, how luck am I, all bring my alter ego with me.

Claire: My nails are very ridged and not very strong I would be interested which supplement you use C 

meme

Comment by Celia on February 20, 2014 at 5:13am

Meme - I am not concentrating - silly me - you are coming over - sorry !!  I shall blame my forgetfulness on being a little lightheaded (in more ways than one.....) after the gym !! x

Comment by Celia on February 20, 2014 at 5:09am

Good morning ! Claire - I take a hair skin and nails supplement and so this has improved the condition of my nails.  I always wear rubber gloves when washing things in the kitchen - this is good practice too I think. 

Meme I am not sure where you live but several of us are getting together towards the end of March - I am near Junction 2 of the M40.  If you are able to join us you are very welcome and of course anyone else.  There are ladies travelling from Birmingham area and Brighton area too as well as more 'local' ones. x

Comment by claire on February 20, 2014 at 4:38am

Hi Again,

I had the injection in my backside and have had no problems from that. I took oral steroids for about 6 weeks and noticed the skin all over my body felt very papery. That however was about 2 years ago. I would not take oral steroids again if I can help it.

On a different question does any one else notice any difference to their finger and toe nails? Mine have just started to flake and appear very dry. Claire.

Comment by Meme on February 20, 2014 at 4:34am

Hello all

I met Dr Chris at Guy’s hospital yesterday for a formal diagnosis and to be officially entered into his research programme.  I have had FFA for 10 years and have now lost about 3 cm. The only Treatment I have ever been given is Nizarol shampoo which I find keeps the inflammation at bay. We did briefly discuss steroids but it was decided not to do ahead with anything. I do believe that if he thought anything could help he would have prescribed it there and then. I was just happy to join the research as I know my father and aunt had alopecia but so far neither of my children are showing any systems but that’s not to say it couldn’t miss a generation, to any future grandchildren.

I would love not to have this condition but I try and put things in perspective. I have good days and bad days (don’t we all) but I am mainly positive, at least I’m not in pain or feeling unwell.  I just look a bit odd. And if that’s how people judge me then they aren’t worth knowing.

I am just so glad I found this website and all you ladies to talk to.

Best wishes to all and looking forward to meeting everyone

Meme

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