Comment

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

 

Comment by Celia on November 28, 2013 at 4:42am

Good morning all.  I have just had my chat with Dr T.  He is most interested to learn that there seems to be an increasing number of pre-menopausal women who are joining our forum.  He is very keen to be contacted by FFA sufferers, as those of you who have spoken with him are aware. 

Comment by sallylwess on November 27, 2013 at 8:10pm

Hi Jess, I am so sorry to hear about your diagnosis.  This is the place for you because you will get a lot of great support.  I, like the others, have read through everything I could on this site and learned more than I could ever have learned from a doctor.  I actually printed out part of this discussion and gave it to my derm who thanked me profusely.  She also asked for the name of the site so she could give the information to another patient of hers who had just been diagnosed. I'm sorry you are having to deal with this at such a young age.

I saw four dermatologists, three internal medicine doctors, and one endocrinologist before anyone diagnosed my FFA.  Mostly, I was dismissed.  Finally, a derm biopsied my scalp, and came up with the diagnosis.  I was given clobetasol.  I have not used it much because I try to stay away from steroids.  I have now started going to a dermatologist who actually missed what this was in the beginning, but is now very interested in doing what she can.  I hope to start the Rogaine in the next week or so.  I am also doing a lot of reading on the diet in regard to inflammation.  I will start the TQI (Http://TQIDIET.COM ) after the first of the year.  I figure I might as well not set myself up for failure by starting a new diet just before the holidays.  I hope this is helpful to some of you.  You have all been so helpful to me.  

Comment by Jen on November 27, 2013 at 7:16pm

What about using the Rogaine only on bald spots.  Will there still be shedding? What happens to women (beside shedding and possible hair growth) who use the Rogaine for men?

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