Comment

Comment by Pam on March 14, 2014 at 1:53pm

Celia - looking forward to seeing you on Sat Mar 22nd. What time are you expecting us? Would you like us to bring anything towards the lunch?

Comment by Polly UK on March 13, 2014 at 5:50pm

Got it thanks C xx

Comment by Celia on March 13, 2014 at 5:33pm

Polly I have just sent you an e mail on this site - let me know here if you don't get it. x

Comment by Anne Louise on March 13, 2014 at 4:15pm

Thank you all for the eyebrow tattoo feedback. I had my consult today and I will likely go through with it, once I get the courage up. The permanent nature of it puts me in a bit of a panic, yet I love the thought of not having to deal with makeup and swimming without looking like an alien. I started using Latisee two weeks ago, and even though it's too soon to tell, I am noticing some slight re growth. Would a tattoo hamper any potential re growth?

Comment by Polly UK on March 13, 2014 at 3:20pm

Hi Celia, really looking forward to our meeting next week - please can you send me your address and also a taxi firm phone number, I will be coming by train again.
Also are you still taking lymecycline and if not did you notice any changes when you stopped? I've taken the last tablet today of my 2 month prescription and my scalp has felt so good during that time that I'm concerned what will happen now..

Thank you Jules for your participation in the telephone conference and the research sounds very interesting. Look forward to hearing more about it on 22nd.

I had my eyebrows done at the end of January and I'm very happy with them, it's great not having to pencil them in every morning and they look so much better than I could ever do.

Polly x

Comment by Celia on March 13, 2014 at 1:42pm

Sounds good Julie - well done  !  Claire I hope you got the address for the 22nd.

Comment by Jules UK on March 13, 2014 at 7:09am

Sorry, that shpuld read Jules!
C, do you want to add this feedback to our agenda at our get-together and I could bring my paperwork to date?

Comment by Jules UK on March 13, 2014 at 7:07am

Thank you, ladies, for your encouragement! The tele-conference was really interesting. As first contact between steering group members, it was about clarifying roles and responsibilities, agreeing the scope of the PSP protocol,(as outlined briefly on alopecia UK) and setting the agenda for the meeting in London in May. The ultimate aim is to identify questions about treatment unanswered by research to date, and to prioritise them in order to approach "partners" who could secure funding for targeted research. The whole process will take 14-18 months, and we will be invited to participate in completing surveys to help narrow the issues that concern us most. It's an established protocol that has worked for other conditions such as acne and vitiligo. The group has dermatologists, a trichologist, a psychologist, a wig technician plus alopecia sufferers.
This is a bit of a ramble and probably enough for now. But I hope the process will produce real results in raising the profile of our condition and encouraging research!! Please have a think, in the meantime, about what survey questions would be important to us. The meeting in May will be about compiling the first online survey....
Jukie x

Comment by Celia on March 13, 2014 at 7:03am

Hi Claire - I will e mail it to you through this site. Celia

Comment by claire on March 13, 2014 at 5:33am

Looking forward to meeting all you ladies next weekend 22nd. Just wondered what the arrangements are and how will you let me know the postcode. many thanks Claire. 

Well done Jules for undertaking all this extra work- looking forward to hearing all about it.

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