Comment

Comment by Celia on December 1, 2013 at 4:09am

Hi Debs - yes it did come through ! I have also repeated the e mail address on here a couple of times too.  He didn't mention the saliva test to me but I have e mailed him my address.  I think probably people go straight to this part of the forum.  Hope your messages are opened.

christos.tziotzios@kcl.ac.uk

Pam W I was interested to read the newsletter - thanks to you and Debs. xx

Comment by Debs on December 1, 2013 at 4:04am

Hello Ladies, 2 days ago I sent an email to everyone i this group giving the email address of Dr Christos Tziotzios as this forum is a bit of a pain in the way posts disappear so quickly... can anyone please confirm did the email to the group actually work ?  Also can you all ask your derms to pass on his email address to other patients with FFA so he can have as much DNA to work with as possible.  XXX

Comment by PamW San Diego, CA, USA on November 30, 2013 at 4:36pm

Hi, I emailed Dr. Christos today.  Also, CARF in the US has a November Newsletter.  I am attaching it to this email.  Hope you can open and see it. 

CARF_Newsletter15_Nov2013.pdf

Good information - but I don't think there is anything we haven't heard or know.

Best regards to all.

 

 

Comment by Bling Girl on November 29, 2013 at 7:27pm

I sent all of my information to Dr. Christos today.  I will do anything I can to help him find a cause and a cure for FFA.  I'm glad he wants data from "across the pond"!

Comment by Celia on November 29, 2013 at 1:39pm

Thank you Debs for the info about Dr Christos and the saliva test - isn't it great that he will be happy to collect data from ladies across the pond too.  I know that there have been 114 people on this forum and that a number have stopped posting over recent months.  Perhaps if some of you are still reading from time to time you may pick up the information that Debs got from the CARF meeting in London and contact Dr Christos yourselves - I am sure the more data he can gather for his research, the better the chances of making progress in the search for reasons for FFA and a cure.  Fingers crossed ! X

Comment by Jean on November 29, 2013 at 11:05am

I'm also speaking with Dr Christos on Monday.  Well done Celia for starting up the forum, it's meant that Dr Christos can tap into a ready-made supply of willing participants in his research.  I'll let you know how I get on.

Best wishes

Jean

Comment by Pauline on November 29, 2013 at 9:25am

Hello Celia,  I have just sent an email to Dr. Christos providing him with all of the information about my condition as you suggested.  I will let  you know how he responds.  It is reassuring to know that I am not alone and that there are people out there who do care about sufferers of FFA!  Kind regards, Pauli

Comment by Celia on November 28, 2013 at 9:27am

Maddy - having written the one page and e mailed it to Dr T - he still asked me qs that had been covered in the e mail.  I suspect he works from a checklist that he completes.  It's great that he is also gathering info from non-UK residents.  There is so much info on this forum that must surely be very useful to anyone researching this condition.  Have a lovely holiday and put FFA out of your mind as much as you can ! x

Comment by Maddy, California, U.S. on November 28, 2013 at 9:04am

I have also contacted Dr. Christos. We are going to set a time as soon as I return from my Thanksgiving holiday away. Celia - that is a great idea about the one page synopsis! I will definitely do that. Thank you all so much for all of the support and for all of the information. It makes me feel not so alone...even though I would never wish this condition on anyone.

Comment by Celia on November 28, 2013 at 4:50am

The e mail address is                    christos.tziotzios@kcl.ac.uk

At Guy's Hospital research clinic they are applying for a 3-4 year grant to research into this condition.  I wonder if the ladies who have recently joined us would be happy to contact Dr T (I asked him for the pronunciation of his name and we agreed that Dr Christos is easier !!)  I wonder also if those of you not UK resident would contact him too.  I sent a one page synopsis of my condition :-

Age

Onset of symptoms

Opinion as to the trigger for this

Medication

Family history etc

Thanks yet again to Debs for doing the groundwork at the CARF meeting recently.  XX

 

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