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Comment by Ana_Brazil on January 28, 2018 at 1:19pm

Hi! I would like to share and hope it will help some of you.

I have been in treatment for about 2 years, with FFA not diagnosticated for probably over 10 years.
I have taken orally: hydroxychloroquine + Dutasteride for 1 year, and I mentioned here that I decided to stop just because I wanted to see what would happen, and I definitely lost a lot more hair during the period of 2 to 3 months off the medications. So my doctor decided to go back to only hydroxychloroquine, and it does make a difference to me. We are going to re-evaluate at the end of next month and decide to keep only one drug or two. 
I did not have any side effects, I am sort of an athlete, I row, I ran, I have a very strict healthy diet, but I eat pizza and sweets once in while. I think the drug can help and there are many people taking it. I also found through recomendation from someone here CARF and it has been a place to learn, for me and my dermatologist: http://www.carfintl.org/. I support them!
I talk to someone that share info from different conferences. One data she shared was about sunscreen:

CICALs should avoid these two sunscreen ingredients

1. Avobenzone

2. Oxybenzone

They are news on their site.
I regret stopping the medication, but it was important to know if it was really working, and it was.
Love,

Ana

Comment by Liz Lov on January 28, 2018 at 1:06pm

Ladies, let me share something with you, there IS a glamorous life with ffa!

After spending the last 4 to 6 years stressing, crying, screaming, hiding, experimenting, whingeing, bargaining , ‘managing’ my ever growing shiny forehead with hairbands , I am PAST it! 

I am now a full time wig wearer and I am LOVING it! I’m 64 years old and I am going to have some FUN with the way I look!

My ‘story’ is in the thread ‘Counselling! We are our own!’

I decided against the medication route, too unsure about side effects etc, feeling so much better after becoming gluten free, dairy free (lifelong excema gone),a fish eating vegan.

Since I have started wearing wigs, just before Christmas, I actually LIKE looking in the mirror, my confidence is back, spending more time on the eye make up, gorgeous earrings etc.

I am NOT going to be defined by a shiny, large forehead, I’m actually feeling quite glamorous these days. I HOPE for everyone that something works for you personally, but please don’t despair if it does not, there definitely IS a glamorous life with ffa!!

Comment by Plf on January 28, 2018 at 4:20am

Hi, halfbakedwho, thank your for your heartfelt reply, I am not at all brave, I have been on an emotional rollercoaster ride since diagnosis.  From what I have read ( I am a nurse), so having been reading as many medical journal articles as possible) FFA has nothing to do with how you have treated your hair.  Your experience with hair and wig suppliers is so unfair and yes your mum is right you will find a sympathetic salon and genuine people that want to help.  The medication I have been prescribed is Minoxidil, spirolactone and dutasteride, so far all I read is they are helpful for female pattern baldness..not FFA, I am assuming that the specialist is trying to encourage growth of the rest of my hair to help camoflauge the other hair loss. I too are very lucky to have supportive family but as you say does not change the fact that we are dealing with such a condition that continually challenges us. Hang in there on this bumpy ride..I'm with you, positivity is good but honestly it's all a bit overwhelming.  Thanks again for your input, please keep up the conversation, your support is wonderful, 

Comment by Halfbakedwho on January 28, 2018 at 3:45am

Hi Plf, I was just diagnosed last Spring. Depending on where you are, there are a lot of people here who probably have more suggestions than me. So far I’m able to hide behind my hair that’s left. I have been on the same medication since last July, and I’ve lost more hair, so I can’t tell you if it would be different had I not been taking the medicine.

I was encouraged to get a diagnosis by a hairdresser too who told me he’d never seen hairloss like mine. 

Today, in spite of my recent positivity, I feel a bit sick, because my left eyebrow has been itchy, and I see it’s getting sparse - a beginning of a patch. So, it’s up and down. Some days I feel fine, and don’t care much, and feel like I can take whatever life throws at me. Other mornings like this one, I feel defeated and scared, and worry about how I’ll look in a month, a year, etc. I feel like it’s just really unfair - we all see how some women seem to age so beautifully. I have always wanted to be one of them (of course!). 

My mother has been helpful (strangely enough!) ; )

She was always so critical of my hair throughout my life - it’s curly, crazy hair. She encouraged me to get it straighened, blown out, etc. The dermatologist says now, «  NEVER AGAIN, » and it’s possible that the straightening in the past couple of years brought out this illness...

But today my mom says, « everyone loses some eyebrow with age », and « don’t worry, you will find a good hairpiece... » This is comforting...

So far I’ve been to two hair/wig places. The second one seemed more promising, but since my hairloss isn’t so apparent yet (and they’re used to dealing with chemo and AA patients) I never got a call back with an estimate. I’m not taken very seriously at these places. I suppose that could be considered a good thing, but I also think they throw up their hands a bit too fast - they would have to actually *think* about how to custom-design extensions or a hairpiece and apparently that’s not their thing. I got my first « real » (head-hiding) headband this week, and though I don’t absolutely need it yet, it’s good to have - if not exactly comforting. 

Again, I have written a novel - I hope some of this helped - the others will definitely have good info. Again am a bit shaky this morning... eyebrows, you know.  ; )

Have a good sunday. 

Comment by Plf on January 28, 2018 at 12:24am

Hi, just recently diagnosed with FFA, and in a dilemma as to go on medication, or accept that I will have to wear a wig, so many questions, and scientific info lacking.  Has anyone had good results with .education? Thus halting the progression of frontal hair loss? My hairdresser could only tell me the three clients he knew of has lost hair back to behind their ears...not very encouraging news, any input, hints tips would be greatly appreciated, thanks

Comment by Halfbakedwho on January 27, 2018 at 4:52pm

Just checked out the FFA Facebook page. I am now a member but I use a different pseudonym on FB and am very cautious about my anonymity.One of my good friends knows I’m here, but otherwise I try to keep a low profile...

I myself looked at a lot of the pictures of the FFA women on FB (yes guiltily curious!), and was especially curious to see how people are hiding it. In any case I saw A LOT of women who look just like me. Srange sisterhood this is... 

Comment by Plf on January 26, 2018 at 8:47pm

Thanks Rachel, and thanks to all for discussion and honesty...the journey continues

Comment by Rachel Germany on January 26, 2018 at 5:41pm

Have a good weekend everybody!

Comment by Afraid on January 26, 2018 at 4:27pm

You are all so fabulous!  Thanks Minter, Liz & Half baked. 

Have te a lovely weekend everyone & fingers crossed for good Hair days!

Comment by Liz Lov on January 26, 2018 at 4:24pm

Yes the ffa is def exempt from VAT-

might need a note from your doc,

not sure about that.

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