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Comment by DebFromCA on November 26, 2014 at 11:41pm

I too have declined all meds.  I don't want to treat the symptom - I want to resolve the problem; which I see as an imbalance in my body.  I was diagnosed in 2009 and also told there was no cure.  I went through many stages, including:  "I'll fight it", "I'll accept it and live with it" and "what can I do different for my body to stop it".  I finally changed my mindset and no longer think of this as FFA.  To me it is an autoimmune/inflammatory disease that I focus on.  I am researching and making lifestyle changes in line with AI.  I now have a functional medicine doctor and I have found a sympathetic traditional doctor at my health plan who has helped with diagnostic tests (unfortunately he retires in March 2015).  I am basically now eating a paleo diet - this after years of eating vegan/vegetarian.  The first bites of fish, chicken and eggs were very difficult.  My hard-fast rules are no grains (and therefore no gluten) and no dairy (casein especially).  I have reduced sugar and eliminated soy and avoid processed foods.  I am also taking supplements - especially vitamin D (which I tested low in) and an enzyme/pro-biotic with each meal. My flareups are gone - so far.  I use cedarwood and rosemary essential oils topically on my scalp where I have the hair loss.  The cedarwood has helped reduce any signs of inflammation or itching - but since those symptoms are mostly gone now I continue to use the oils as a tonic.  I apply an oil treatment once a week with bhringraj oil - an ayurvedic treatment for hair.  I do this to nourish the scalp and hair. I try to meditate (I'm not very good at making the time) and reminding myself to de-stress. Stress is a big factor in this and other AI conditions. I'm trying to make exercise a priority also.  I am making an effort to remove toxins from my life including plastics, pesticides and chemicals. I have only recently settled on all of this so the next months will tell.  I will repost if there are significant improvements or failures in my protocol.  Best wishes to all of you fighting the same battle.  Take care of yourselves.

Comment by Jen on November 26, 2014 at 10:33pm

I concur with Sad in Chicago.  When I was diagnosed, I spent days looking on the internet for any sign of a cure. I started taking the injections and to my dismay, the hairloss accelerated so I stopped all treatment and started to figure out how to deal with the forehead which was getting closer and closer.   I have been able to work my curly hair in such a way that no one would notice the missing hairline. I am experimenting with soft headbands when I am in the warm climates. I wear sunhats and tell people that I burn easily  since menopause.  I have not yet used any hairpieces. Recently, I was paying more attention to my makeup, clothing and accessories and I too think that I look good. I use a primer on the little eyebrows that I have left and then dark brown and black eyeshadow. I apply the brown first with an eyebrow brush, then put little streaks of black here and there to add dimension.  I put a bit of concealer under the brow and the eye area looks really good. No one has ever asked about my missing eyebrows. It is probably hard to notice with my hair pulled down so low.  I will not put any medication in my body to stop this.  I am actually having fun at the makeup counter now.  I understand that after surviving cancer, you would not want anymore medication. My Mom and my husband died of cancer and I witnessed the amount of medication they used and the side effects of the medication so I stay away from meds.

Comment by Sad in chicago on November 26, 2014 at 10:14pm

I must admit that after reading all of the medical treatments, drugs, etc. and not getting the results you seek, I am pleased with my decision to simply get on with it, snap in my piece and move on.....my derm told me right away that there is no cure for FFA and I believe it to be true.  Having also being a breast cancer survivor, I have no intention of putting additional chemicals in my body.  My derm says there seems to be a socio economic group who comes down with FFA and there is some research going on.  My worst times are when I am home and not wearing my piece -- embrassassing for my husband (my own thing, he is pretty good about this) and worried about vacations, summer, working out and such.  But everyday for work and for social no one knows and I look damn good.  Anyone who is starting to go through this, start experimenting now with eyebrow makeup and get yourself to a hair replacement person who can fit you with a good piece or wig.  Challenging?  Yes certainly, horribly so.  The end of the world? You may think it, but no, it is not.  Learn to hide it and make yourself beautiful.

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.

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