Comment

Comment by Meme on February 27, 2014 at 4:22am

Hello C

I would be interested to hear about medication that everyone thinks has or hasn’t worked. Also ideas and experiences on how to deal with the hair such as weaves, wigs etc; it would be good to get everyone’s thoughts. 

meme

Comment by claire on February 26, 2014 at 5:44am

Dear MJ,

I also take antihistamines every day and have had allergies all my life. No one has ever found out what causes them. On 3 occasions I have been in hospital and they tell me it Idiopathic anafelaxis- very frustrating. Maybe this would be something to discuss at the get together?

Comment by Celia on February 24, 2014 at 6:00am

               

Jules, Pam, Polly, Caro, Claire, Meme and also Cathy are all OK for Saturday 22nd.  Please let me know if I have missed anybody - just updating you.  Thought we might try an agenda for an hour or so - not toooooooooooo formal before lunch !  If you have any items for this, please let me know.  Thank you !

Comment by MJ on February 20, 2014 at 4:31pm

Thanks. I will look up Dr. Price. I would like to know if anyone in the states is planning on attending the CARF conference in Chicago..I would like to attend but will not be ablr to.

Comment by Debs on February 20, 2014 at 9:05am

Dr Vera Price in the USA thinks FFA results from an environmental insult and is researching the role of dioxins. Dr Price is part if the CARF organisation and this info was passed to me from one of our group in the USA that has attended support group meetings with Dr Price. Research is happening into a trigger.

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.

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