Comment

Comment by jess on November 12, 2014 at 4:18pm

I am very excited about the transplant!! I hope it works for you Sas and hopefully for the rest of us

Comment by Sas Holland on November 12, 2014 at 3:27pm

Hi Donelle, i live in the Netherlands and are also not able to attend theCarf meeting unfortunately.
But I am also just like Jen interested in the trestments you had
Here's an update frommy second visit to my dermatologist:

I visitedmydermatologistyesterday for theresults of my biopsy. It isdefenitely FFA but in a very mildstadium now.
They give me the chouce to start with Cyclosporine for 4-6 months while they monitor my bloodpressure, kidney and liver securely.
I then can have a small trial stemcell transplant. The cyclo is to prevent that the FFA willbe reactivated by the trauma of transplantation, (Kuppner effect)sine they find cyclosporine works thebest against the lymphocytes that are fighting and killing the hairfollicles.
He assures me that this trauma of transplantaion cannot trigger FFA all overmy head or in other areas then where the trauma is.
After this small testarea transplant i have to take thisCyclosporine for another couple of months so the new hair won't be rejected.
I have a week to decide if i want to take the cyclosporine or not. Another option is to just take the cyclo and not have te test transplant and last option is to take nothing. He says minixidil is useless because it only works for male hormons and this FFA lymphocytes are not responding to it and also that you will only get a few babyhairs from using it, not much more
I am very interested in hearing stories about the cyclosporine, what it did, did it stop or slow down the FFA and what were the side effects?

Comment by Jen S. on November 12, 2014 at 2:21pm

Donelle - unfortunately I live in Atlanta, Georgia.  So, getting to the CARF meeting is not possible.  However, given that you have had FFA long-term, I am sure a bunch of us would love to hear your thoughts on the treatments you've tried.  Has anything proven helpful for you?  Thanks!

Comment by Catherine on November 12, 2014 at 2:10pm

Hi Donelle,

I will be there! I look forward to meeting you.

Catherine 

Comment by Donelle on November 12, 2014 at 11:15am

Hello all

I am new to this site but not to FFA, which I have had for about 6 years.  Of course it was misdiagnosed until two years ago.  I have been through the mill with various treatments, but thankfully now I am being treated now by Dr Aisha Ali at Hammersmith and Charing Cross Hospitals.  I would be happy to talk with anyone about my condition and treatment etc but the main reason I'm writing today is to encourage anyone who possibly can to come to the CARF meeting in London this Friday.  I have just been on the phone with Dr Christos Tziotzios who will be one of the presenters.  Many of you know he is one of the foremost researchers now looking for a possible genetic cause for FFA.  He said last year there were about 80 participants but the conference was held on a Saturday whereas this year's is on a Friday.  So please do come if you can.  I would love to meet some of you there!

Comment by Liz on November 11, 2014 at 5:16am

Hi

I had a phone call regarding the CARF meeting in London next week. Apparently there has been very few people singing up to go along. I am unable to due to work. Is anyone else going? Can anyone else go? xx

Comment by Sas Holland on November 10, 2014 at 11:26am

Thanks very much, Anne Louise for uploading this Carf document, very usefull for new members like myself!

Comment by Anne Louise on November 10, 2014 at 10:25am

Since there are new members here I thought I'd post a link to the most recent CARF (Cicatricial Alopecia Research Foundation) newsletter. This organization is a great resource for information and support groups.

http://www.carfintl.org/_docs/newsletters/CARF_Newsletter17_Nov2014...

Comment by jess on November 4, 2014 at 4:14pm

I am also excited about it. Please let us know what treatment she provides you with.

Comment by Pam on November 4, 2014 at 4:09pm

Really interesting to hear about your consultation with Dr Ali, it sounds very promising. I would be very interested to hear about the treatment plan she proposes too. 

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