Yes, I did consider tattooing to disguise the alopecia and I asked the woman who tattooed my eyebrows. She didn't think it would be a good idea. Not sure why. Probably because she's never seen it done. I think it could be tried but considering what it cost to get my eyebrows done I expect the cost would be prohibitive. I think I will ask around this year anyway. We won't know until someone tries it.

I think menopause did it.  I was post menopausal when first noticed changes just thinking my hair was thinning (it was never too thick in the first place) and my Mother had thin, fine hair.  I tried Rogaine, Propecia, etc. after being misdiagnosed with female pattern baldness (did a biopsy fancy derm at Rush Hospital in Chicago.  Wrong!  After another year of freaking out, I was finally diagnosed with FFA by another dermatologist.  Didn't even do a biopsy this time, it is so obvious and so by the book if you google it.  No doubt this is it.  Certain it is a post menopausal tragedy.  Very, very unhappy.  Have a clip in piece tht looks pretty good, but will never understand this, never experienced it in family, never heard of it before, and has for sure changed my attitude.   I was absolutely beautiful as a young woman, and am very vain.  My plan on aging gracefully has gone awry!  My eyebrows are gone too, and I am considering tatooing, but need advice here.  What if you don't like them?  Not life threatening, but boy, this sure is a whammy, and sure took the wind out of my sails.  Plus the money spent on products, hairpieces and time spent on worrying about how I look is dreadful.  

OK, I will stop whining.  I just don't have anyone to talk to about this except my husband and I am embarassed in front of hime too.  

My derm says no resolution on this one and she finds it to be a certain socio economic class of woman who experiences it.

I'm not alone because my 37 year old daughter has exactly the same hairloss as I have. Weird. And, I'm sure we have the same condition for different reasons. She is going to have a biopsy. I don't think I will. Whatever the cause, it's the outcome that I am concerned about, though, I can't say I care as much as I might have if my life had gone smoothly and I hadn't lost my first husband suddenly years ago (major, major heartbreak) and I didn't have a very severely disabled 29 year old son who is totally dependent on me. Sort of puts hairloss in a different catagory. I've got bigger worries. Nevertheless, I can't say I don't care at all because I do. I'm trying to make sure that I don't make it worse. That's why it is important to figure out what caused it. Maybe testosterone, maybe Pariet, maybe an autoimmune problem, maybe menopause (and that may actually be because of testosterone dominating the hormone balance), maybe some deficiency (iron, magnesium, B12, who knows). The thing is to find our own way of coping with it. I'm working on that. This site is great. I have learnt a lot. Thanks to all who contribute their thoughts and insights.

Ladies, I wrote a blog post about my hair loss journey.  You can read it here.  It took me a long time to go public with this condition.  I do so now to raise awareness.  http://sallysbloggingspot.blogspot.com/2016/01/hair-journey-of-loss...

sallylwess, thank you for writing that fantastic blog post and for raising awareness for our condition. 

Sallylwess please look me up Joy as we have similar hairloss - everyone in the medical community thinks this is environmental - mine has stopped - no more hair loss than normal and some regrowth - very slight - I have started to perspire again which I really had not paid attention to the fact that I had stopped - the LLP is finally gone - I still get occasion itching and am trying to figure out what triggers it - it is all so bizarre - the only thing I have done different than most was the vitamins that I took and still take - so who knows if that is what stopped or not - I am going to follow your blog

sMJ - I take 4 mega stress tabs (B complex), one milk thistle and 2 adrenaplex and either 1 or 2 curcumin a day.  After I started these I stopped all the hair loss and have not lost any more since the initial fallout - I say that but am not sure that it wasn't falling out earlier than I noticed it.  I have about one third of my eyebrow   I check in on the site occasionally and noticed that some had said that they thought retinal creams were not being metabolized and I cut those out.  I had about a two inch area by maybe a half inch of the LLP that just did not want to leave and had read that some of the woman had had lymphatic massages.  I did them once a week for a month and now have done them every couple of weeks and all of the LLP is totally gone.  Everyone thinks I look fine but I have no idea what caused it or what stopped it - which is a little scary!  Nobody seems to get the fact that we all know it is there or should I say not there!

Claire-I'm taking mycofenolate prescribed by my derm.  I've been on it for 1 month and i'm not sure how it's doing.  I also received injections that day.  Two weeks after this the itching started.  Lasted a week or so and then subsided. I'm still losing hair but a little less than i was.  My derm said the mycofenolate wouldn't be as effective as long as i take omeprazole.  I'm having great difficulty stopping it because of GERD.

Hi Brenda, I got myself off Pariet (same sort of thing as omeprazole). It's definitely not easy because there is a backlash much worse than the original condition when you go off it. You need to wean yourself off it gradually. I found Apple Cider Vinegar very good, just a capful with a sweetener in a glass of water with meals, and chewing gum whenever I got heartburn. There's lots of information and advice on the internet. Worth a look. I am so happy to be off that drug and have a digestive system that works just fine.

Thank you Maz and MJ.  I will certainly try the vinegar again.  I was putting a TB in a glass of water but i didn't stick with it long enough.  Good to know that pickle juice will help too.  I definitely believe omeprazole contributes to hair loss.

The east coast of Australia is a huge stretch of real estate. I could get you information from Newcastle. My daughter lives there. She has FFA, among other things, and has seen two dermatologists. The first one tried to tell her she had a type of dandruff. The second one did a biopsy and diagnosed FFA, and three other types of alopecia. He was quite excited about her condition and wanted to take her to an upcoming conference. Of course, my daughter isn't at all excited to have alopecia but at least that doctor is interested.

Well Gai, Don't be deterred by that sort of dematologist. But in saying that I think I understand their attitude.  So far, it seems that what we have can't be cured. They don't think that they can do anything for us so they dismiss us. Not fun. My daughter hasn't, so far, looked into any sort of hairpiece. She even pulls her hair back into a bun or ponytail. I bring my hair forward to cover the bald strip and I think that's the best solution while it works. When/if that stops being effective a topper may be enough. I think a wig would be overkill when there's plenty of good hair from behind the ears. I have looked at toppers on the internet and have ordered one from China for a less than five dollars that looks pretty much like the expensive ones. I don't expect it to be right for me but I want to get more information before I have to work up the courage to go to a wig shop and try their solutions. Medical wigs or hairpieces are going to be expensive.

Maz - Can you share the website from which you ordered the topper from China?

Does everyone know about the Carf patient/doctor conference in New Orleans June 4 & 5.  It would be good to have lots of us there to share stories and what works for us.  Register on the CARF website, www.carfintl.org.  I'm a CARF Patient Outreach Volunteer and would like to meet you!

hi - I live in England. For a long time I got away with the hair forward approach, but got to hate it, especially on windy days! So two weeks ago, I bit the bullet and went to Lucinda Ellory's clinic (she has clinics in the UK and USA). I now have hair! It's called the Interlace System and essentially  is a fine web that fits on your problem areas, with natural hair threaded through. MUCH better than a wig, and very realistic, but not cheap.

However, for me, it is  absolutely worth it. I will have to go back every six weeks or so for the system to be tightened (as your own hair grows it pushes the web up slightly), and every two years will have to have it replaced, but for me this is the best solution I could find and is excellent. People keep asking what I have done to my hair - new cut? New colour? No one (other than those I have told) has apparently realised what I have had done.

I know Lucinda Ellory is not in Australia, but I do think that they are the sort of place where if you emailed them and asked if they know of anything similar, they would respond. Cannot praise them enough. When I eventually plucked up the courage to go for a consultation I came away feeling my (our) condition was completely normalised. Unfortunate, but that was all. Not something to feel embarassed/ashamed about.

As you can tell, I am mighty impressed.

Good luck to you! And you WILL find a solution. You will.

Hi Wyobalance, I ordered the hairpiece on Ebay (item no. 361107015975). It takes quite a while to get stuff from China but it usually gets here. For the price I paid I gladly take that risk. I also don't really expect to get something that will do the trick for me. It is just research and something to play with. I don't even feel brave enough to enter a wig shop at present so this is sort of a delaying tactic on my part. When it eventually turns up here I'll let you know what I think of it.

Maz, thanks for your online info for the hairpiece.  This is lots of trial and error, isn't it.  I'd like to hear how it goes for you when you get it.  

Hi All, I have a question for those of you using Clobetasol.  I was prescribed the foam product and the RX said to use it for 14 days.  I was getting some soreness/tenderness and dry mouth too from using it, so I stopped after day 14. It is now 5 days later and I still feel sore and the itchiness seems worse.  Are you using Clobetasol continuously, i.e. are you using it longer than 14 days at a stretch?  Thanks for any advice!

Hi Wyobalance, Well, I received the topper from China. It was informative and I'm glad I got it even though it isn't usable for me. I've learnt that it is hard to pick the right colour and I didn't. I've learnt that synthetic hair from China may not look natural enough. It's not bad but it's too shiny to blend with my hair. On the positive side the style actually would work quite well for me and would be quite comfortable. I won't be looking for a full wig, that's for sure. I now know that when I can no longer bring enough hair forward to cover my band of white skin I will be looking for a topper, most likely made with human hair, and I'll be very careful about colour and shine. I can see some more trial and error in my future.

Hi Maz, this is ongoing trial and error.  I've ordered a 4x4 from Hairdirect.com.  It costs quite a bit more than the topper you got from China ($500 range for longer hair, less for shorter hair) but I have already matched my hair with Hair Direct as I currently cut and tape litte "fillers" in my bare spots.  The piece I ordered is not a "topper" but just a square 4x4 lace base, so I will need to work it into a topper if possible.  I'll let you know if it works.  A $500 trial & error is no fun.  I also am in touch with someone that uses a professional topper that she pulls her own hair through.  It is super nice.  I think that was $3000+  :(.  

Devastated! Have been crying all day. Just diagnosed today with FFA. No biopsy. Lost my brows in 09 and have been battling with a receding hairline for several years. My derm and rheumatoligist told me it was aging, hormones and nothing could be done. Bought a laser hood 2.5 years ago from a hair center that said they could regrow my hair, nada. Today I went to a different derm and she said right away she knew it was FFA just by looking at my scalp and my symptoms. Gave me several scalp injections of Kenalog today and clobetasol started. Back in a month for more injects. The meds sound very scary but so far nothing has worked.  Daughter just got engaged and I'm so afraid I'll have no hair by the time of the wedding. Where do I start with all this? I'm overwhelmed. 

If you haven't, I recommend starting with contacting Carf (Cicatricial Alopecia Research Foundation) www.carfintl.org.  It sounds like you've got a good doc that is knowledgeable about this.  Scarring/FFA is very hard to accept and deal with.  We have all been there!  (And still are now and then).  I'm so sorry you are having a hard time right now.  If it's comforting at all, there are a lot of us out there and we understand.

Kathyt I'm sorry to hear about your diagnosis.  It is a shock when we hear that our hair won't be growing back.  I got eyebrows tattooed a couple of years ago and that definitely gave my self esteem a much needed boost.  I'm glad you have a good dermatologist now.  The injections are helping to slow my hair loss but they're not stopping it yet. I wish you luck.  

I am so very sorry to read how you are both suffering. I went through almost exactly what you write - was told it was my age (I am now 65, was around 60 then) that was causing the problem and that nothing could be done. So I did exactly that - nothing. Other than lie awake at night feeling terrible. I couldn't even tell anyone - I tried to hide it, as if I had done something to be ashamed of.

But eventually I had to admit it. We were on a walk on a windy day and my six-year old grandson commented 'Nanna is going bald!'. Argh. It was truly horrible, yet I really do not know why. I am a strong woman who has never believed people (especially females) should be judged by their looks. I am not vain, and as healthy as can be. So why does it have such a profound impact on the way I see myself? Yet it does.

I spent an inordinate amount of time worrying. The loss, like BBQueen, was about two inches all round, perhaps more on the top. However, my hair at the top and back is still thick, so I was constantly pulling it forward - hairspray entered my life with a vengeance! And I loathed photographs, special occasions, windy days.

Then, about two months ago, I decided I had had enough. I had, like most people on this forum, spent hours upon hours researching online what to do (and remember, I had no idea until that point that there were meds that were being tried - I had been so dismissed as 'old' by my GP it completely stuck - more fool me).

So three weeks ago I bit the bullet and went to the Lucinda Ellory hairloss clinic for women (in London, but in the US too). And now I am the proud owner of an Intralace system - it's a prosthesis that is attached by a sort of fine webbing to  your scalp by way of your own hair and tape. So now I have 'my' hair back. Better than a wig for me, as I do not have to worry about it coming off, I can swim in it, do anything in it, and to all intents and purposes it is mine. It's coloured and styled to match my hair exactly, and no one (other than those I have chosen to tell) notices. Lots of questions about whether I have coloured my hair, or had it re-styled, but nothing about 'what's that on your head'?! Not cheap, but highly recommended and the best solution I can find for me.

And there will be a solution for you. Alongside the regaining of hair and of 'me' that the Intralace has given me, perhaps the most profound change is the normalising of my condition. It is not something to be ashamed of. It is just bad luck. Going to the clinic and seeing loads of other women in worse positions than me, and talking about it with people who knew what I felt just helped give me my perspective back. I have FFA, but I am damned if I am going to allow myself to be defined by it for the rest of my days.

To you both - I truly feel for you. I know what it feels like and it is horrible. As has already been said, use this forum. It helps to 'speak' to people who do know what it is like. And try, try, try, not to do what I did and just accept there is nothing that can be done, even if the solution is, like mine, an artificial one. I don't care - it works for me!

Love

x

Dear Kathyt, I am so sorry to hear of you diagnosis.  It breaks my heart whenever I read of newly diagnosed women.  This disease is devastating for so many reasons.  We suffer such a sense of loss.  Our identities are wrapped up in our hair more than any of us realize until suddenly our hair begins to go.  For me, it caused me to have some pretty significant depression.  I told my friends, my family, and I bravely tried to move forward hoping against hope that the loss would not become as extreme as it was in other photos of others with FFA that populate the internet.  Sadly, my hair loss did become extreme.  I have lost a great deal of hair in the frontal areas and on top of my head.  I no longer in able to hide the condition with hair styles or even headbands.  I now must wear a topper whenever I go out if I wish to look as if I am not half bald.

I have written before that the fear of how much I would lose was worse than when I finally lost the hair.  Somehow, I accepted it more once the hair was gone than when I was worrying about it.  

At first, I was told nothing could be done.  I have had kenalog injections.  I think they may have slowed down the progress, but they did not stop the loss.  I then became allergic to shots.  I tried clobetasol.  It only relieved symptoms.  Then, I became allergic to the clobetasol.  I am now taking finasteride.  I think it is slowing down the loss, and I am actually thinking I am getting some new hair growth.  Time will tell.

I spent an inordinate amount of time and money on wigs and hair pieces, most of which never worked well for me.  I finally spent a large amount of money to have a topper made specifically for me. It isn't perfect, and I will tweak its design better if I have another one made.  I have/had silver gray curly hair.  That is a hard one for wig designers to match.  

Quite honestly, if I had it all to do over again, I would never have bought a wig or topper in desperation.  I did a lot of research before I purchased my wigs, but I found I still was naive and did not make good choice.  I would have saved my money, not bought wigs, and flown to LA for the interlace system.  I think that is the best solution.  I know it is pricey, but I have spent as much on wigs that didn't work as I would have for a system. 

Know you are not alone.  There are more of us out there with this than you might imagine.  I hope I have been a bit of support for you.  As always, I pray for and hope for the day when we see a cure for this and have an understanding of what causes it.  My best to you, Kathyt.  

BBQueen, I am interested in the restoration place in SLC.  I will be there in May.  Can you privately send me information on it?  Thanks.  

You said the most wonderful thing "I am getting some new hair growth" And from what I recall you have not been on Finasteride that long. Wouldn't that be the best thing ever!! I will send you a message now...

Hi Gai

Intralace works for me .... follow the message trail below. It has helped me, not just in terms of self-esteem, but - ironically - to regain a sense of perspective about the condition itself. The experience of talking about my hair loss to the excellent people at the clinic (and they are truly empathic and knowledgeable) and of seeing lots of other women in similar, or much worse, situations to my own, definitely helped me come to terms with my own problem. I am certainly not thrilled, but neither am I distraught any more. And if, for some reason, I could not stick with the Intralace, then I hope I would deal with whatever happened next far better than I coped before.

Cannot recommend Intralace enough (and, no, I am not employed by them!).

Hi

The intralace is attached to my own hair - anchored - by my own hair being taken through and 'knotted' to new hair. Then an entire piece of new hair is fastened onto the system and styled - that covers the bald bit at the front. 

The hairline is left loose - when I wash my hair I can therefore wash under it. It is then stuck down with tape (by me, not the clinic, obviously) and provides a VERY natural looking hairline.

I don't know what an integrated system is - sorry. 

Have a look on the Lucinda Ellory website. Look especially at the images, and also the explanation of the Intralace System and the bits on FFA.

Denise

Hi DeniseC,

I looked at Lucinda Ellery FFA information. The transformation looked stunning. Do you know if they work with curly hair? I cannot find naturally curly hair solutions that match my bio hair. What I see out there would require me to constantly flat iron my natural hair for match.

Hi MnM! I am also a younger patient in Chicago. I'm going to try to get an appointment for eyebrows here: http://studiosashiko.com/ I've never been to Vancouver and have always wanted to go (although they just opened a LA office) so I figure "Now's the time!" Their work is amazing. What doctor do you see in Chicago?