Comment

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.

Comment by Jules UK on August 24, 2014 at 2:08pm

Also, I saw a new (to me) dr last week. Dr Kaur at Solihull. Dr Harries recommended her as someone closer to home. She says I've lost 5cm each side above the ears and 2 cm from the front. The front is thinning but she suggested it may not go completely but stay thin. Anyone else had similar? Thinning but not losing?
Still on Plaquenil and Regaine.
X

Comment by Jules UK on August 24, 2014 at 2:05pm

Hi all
There's a meeting of the steering group on Tuesday to finalise the survey on alopecia questions which goes live early Sept. I don't know whether any UK ladies have checked out the alopeciaUK online site, but there's a countdown clock alongside further info about the whole research issue. I really hope our UK members will take part!! We need to represent FFA! The survey is open to all hairloss sufferers, whatever the cause, so our voices need to be heard...... I'm disappointed that it's aimed only at UK but that's all that funding would support.
We're also looking for suggestions as to places to publicise the survey - any suggestions? I thought of writing to magazines; Good Hpusekeeping ran a feature on hairloss a couple of months ago. Or radio programmes like Radip 4 Inside Health. Any ideas?

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