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Comment by Classical Anne in NC mountains on November 26, 2014 at 9:15pm

Welcome, Marilyn.  You're in the right spot, and we're happy to have you add to our conversation.  Sorry, though, about your diagnosis.  You will find much support and encouragement from the ladies in this group.  Don't hesitate to let us know your questions and challenges, as you most often will find someone here has already been there.

Best wishes in this journey,

Anne

Comment by Marilyn on November 26, 2014 at 9:03pm

Hi, I'm very new here and just wanted to be sure I'm posting correctly on the FFA page.  I was diagnosed in 2009 and decided I could use some support from those who have FFA.  All friend requests will be very welcomed.  Thanks in advance.

Comment by Sas Holland on November 25, 2014 at 8:39am

Hi Rebecca, thank you for your reply, I glad you give me your doctors opinion!

All opinions are welcome.

Yes I know it is very experimental, my own dermatologist  keeps telling me that too. But they only will do a small section first (50 grafts)  to see whether it will fall out.

I am still waiting for the answers from the questions I asked the Hair Institute about on how many women with FFA they have tried this successfully and how long ago that was, so  I still have to make the final appointment to go through with it. They will give me a phone call next Thursday. Dr Gho is apparently abroad now.

I have decided though, if the answers are not too disappointing ,  to try this small section transplant and decide 9 months later (I have to wait that long) depending how it felt, how it looks,  if I will have the real one.

About the  "FFA is still active" part: My biopsy showed that there was very little activity going on at my hair follicles,  and you can see nothing red of flaking at my scalp either.  (thats why the dermatologist gave the green light for the test stemcell transplant at the Hair Science Institute) but it was not  gone completely. Are there members here who's biopsies  at any time showed no activity at all?

Comment by Celia on November 25, 2014 at 8:07am

Has anyone had any success with taking Cellcept ? I am on the brink of this but the side effects are so wide and scary - I can't think of anything in the body that might not be affected !! Thanks !

Comment by MJ on November 20, 2014 at 6:01pm

Sas,
That is exciting news! Fingers and toes crossed that it is a success!
MJ

Comment by jess on November 20, 2014 at 1:08pm

I am very excited that you are doing the transplant. I have decided that I also want to have it done, even if it means that I have to leave the country. Best of luck to you.

Comment by Sas Holland on November 20, 2014 at 9:34am

Hi everyone,  here's an update. I spoke to my dermatologist a couple of days ago on the phone. I have decided to go forward with the test stem cell transplant of 50 grafts.  He says it's the only transplant that is suitable for FFA patients, since the "normal or traditional" hair transplant technique is making to large holes in your skin and therefore ruins your skin. My FFA is in remission already, so the biopsy showed.

I need to take Cyclosporine exactly 1 month before the transplant and then a couple of months (I think 4) afterwards. I must make an appointment first with the Hair Science Institute in Maastricht with dr Gho, who will perform the transplant.

I will keep you updated on my progression with it as soon as I know more.

I need to patch up (is that how it's said?)  the tattoos on my eyebrows  first though, since I cannot do this when I take Cyclosporine, says my doctor, because  I have to avoid getting an infection while I am on Cyclo, since it suppresses my immune system.

Comment by Celia on November 15, 2014 at 3:17am

Ladies who have had eyebrow tattoos - don't forget to use a high SPF on them to help prevent fading !

Comment by MJ on November 14, 2014 at 6:49pm

I still have a little arm hair, but I have no idea how long ago most of it disappeared. I still have to shave my legs but the hair is definitely more sparse. Sparse in the bikini zone too. But, although my brows thinned, I did not lose them. I have read that eyebrows are 50/50 although I think most on this forum have lost them. It may be I caught my FFA early enough and got started with rogaine on my brows before they went....

Comment by Classical Anne in NC mountains on November 14, 2014 at 6:30pm

Linda, I just went back and read your interesting first post, in July 2013.  Sounds like you do have a very good medical team on your side.  Sorry for the stress and more recent depression you mentioned.  But glad that your latest post says that you're taking one day at a time and handling it.  There are quite a few of us here who would be interested in your derm's latest diagnosis.  It would seem that almost all of us have AA as well as FFA.  Which illustrates what a complicated and poorly understood condition this is.  The proof is here that eyebrow loss accompanies almost every diagnosis of FFA, and that arm and leg hair loss is common.  But I would hope we'd all be spared the emotional trauma of losing scattered patches of hair all over the scalp, as is common with AA.  I have started wearing a wig for certain occasions, because the quality and manageability of my remaining cranial hair is now low.  But I continue to be so grateful that a pretty scarf band still can cover the FFA loss on a daily basis, and gives my spirits a little boost.  Do please let us know if your derm provides further information regarding the eyebrow and limb hair loss.  Sharing thoughts with one another makes this website one of our chief forms of information and support, and I'm glad you're taking an active role in it!

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