Comment

Comment by Jules UK on September 3, 2014 at 6:42am

Same here, Celia, thanks.

The survey goes live on the 8th Sept. It has been improved greatly since the first draft went out and feedback from everyone who completed that was instrumental in clarifying the wording and making it mush more succinct! I'll be something of a nag, I suspect, with regular postings to encourage our UK ladies to take part.... It's open until the 31st Oct.
At the last meeting of the steering group, there was someone with contacts withe media such as Vogue and other mags, as well as radio and press, who will aim to publicise the survey. Another member is a GP who will organise official NHS emails to UK wide surgeries with flyers to display. Everything has to be done along official lines because of ethics etc.
I have to work out how to open a discussion on this site to inform about it.
Debs, I wonder whether you would do a similar post on your wig support site, if you wouldn't mind?
Btw, house moves are BAD for hairloss!!
X

Comment by Catherine on September 3, 2014 at 5:55am

I would love to join you this time if I may? 

Comment by Pam on September 3, 2014 at 5:45am

I would love to meet up again, I found it really good to talk to people face to face, share our problems and give each other support!

Comment by Celia on September 2, 2014 at 11:01am

If any UK ladies would like another get together, please let me know - it would be nice to see you all again. X

Comment by Debs on August 27, 2014 at 5:07am

Pam those are excellent ideas. Like you I personally would not want to go public with my FFA but if there is any lady in the UK that would go on embarrassing bodies it would be terrific.

Comment by Pam on August 26, 2014 at 3:43am

Jules - Another suggestion for publicity  for FFA is the Womens Institute Magazine, WI Life.

Also something on TV would be great as well. Not sure if I want to go on Embarrassing Bodies though!!!

 

 

 

Comment by Debs on August 25, 2014 at 6:05am

Hi Jules, I suspect there a lots of women with FFA that are left out of our discussions and probably don't even have a diagnosis because they are not computer literate and therefore are not accessing information. How on earth the survey can reach them in this day and age I don't know.... certainly the idea of using radio is very sensible, I think the NHS should be more proactive. GPs know who is diagnosed with alopecia and could send out the questionnaire. I am sure their admin staff could do that without it adding to their workload too much, God knows they don't have a cure for us so we should deserve some assistance. NHS doctors are doing research so surely NHS GPs can co-operate and pass info on to Alopecians. Thanks for all the time and effort you are putting into this. Much appreciated.

Comment by Jules UK on August 25, 2014 at 5:17am

Thanks, Norfolk Girl too!!

Comment by Jules UK on August 25, 2014 at 5:16am

Thanks so much, Terry, for your suggestions. It'll be useful to have as many suggestions as possible to put to the meeting tomorrow.
Also, I really identify with your observations about windy days! I can't stress enough just how transformative myhairpieces have been to my confidence. I feel more relaxed and honestly forget I'm wearing them. They particularly suit my pattern of hairloss but I'm sure Rob could accommodate any problem areas. I think Pam posted his details, in Cheltenham. X

Comment by Norfolk Girl on August 25, 2014 at 3:32am

If Women's Hour would do something on FFA that would be brilliant and would reach people who perhaps had FFA but didn't realise it.

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