And I am looking for the intralace system in Chicago.  Lucinda Ellery will not give a recommendation or referral.   Could afford to get to NY or LA once maybe, but could not continue for the upkeep.  Thank you.

I am still doing good - no more hair loss or itching - tried rogaine for a while but it seemed to irritate the very front of my hairline which is still ever so slightly inflamed from the LPP.  I still have taken no meds and have kept up my vitamin usage - I have also used thyme, rosemary, lavender and cedarwood essential  oils mixed with some coconut or argon oil on the areas I have lost hair - it is suppose to help hair regrowth and at this point for me I think that is a better alternative than the rogaine.  My daughter has sent me and interesting article on Epstein Barr virus - the article is on Goop and called The Medical Medium and What's Potentially at the Root of Medical Mysteries.  This fits alot of what we all complain of but I am and always have been pretty high energy but who knows no one seems to know what causes FFP or what stops it - I still recommend vitamins - this article says alot about zinc and b vitamin deficiencies which I think have come up before in various posts

Kikibob- This is the first time I have commented but have been following this group's discussions. I was diagnosed with FFA and/or LPP around January 2015. I had been treated for several years prior for itchy red scalp. I thought my hairline was receding in certain spots from aging. The doctor is the one who realized what it was and verified it with a biopsy. She suggested Plaquenil, but I have chosen not to use that yet. I used Clobetesol solution and had a bad reaction (inflammation, burning,  and sores) last spring so the derm put me on Fluocinolone Acetonide .01% scalp oil that you have to use nightly, wear a shower cap to bed and wash out every morning. It helped calm my scalp but washing my already dry hair with it even every other day was ruining my hair.  Then my original  diagnosing dermatologist went on medical leave and I saw another who prescribed the Clobetesol Foam but my insurance would not pay for it. Does anyone know how to get them to cover it? She started  me in the fall using Rogaine every night and Olux or OluxE samples every other night. There was no mention of 14 days. Things seemed to be a little better and I even had some regrowth by January. Don't know if it was added stress (my dad passed away in February ) or what but when I saw my original derm in March, she wanted to give me the injections because my scalp was now inflamed again. I am reluctant to do the injections and have stalled hoping things will calm down. Meanwhile the other derm  has run out of samples so I have not used anything for the past week. I am wondering how to get insurance to cover the  the OLux/E if it's the only one I can use without getting a bad reaction. Also wondering if anyone else has tried Joy's protocol since she seems to be having success?

Joy- I am very interested in trying what you have tried. I am leery about taking the medicines, not only because of side effects, but also because no one seems to think they have worked. There seem to be  many varieties  of Mega stress tabs (Vitamin B Complex) with different amounts of each ingredient  and/or additional supplements. What brand of B complex, milk thistle and adrenaplex do you use?

CARF sent out this email today regarding a British study that was recently published. Just wanted to make sure everyone got to see it.

Hi Terry

I know PRECISELY how you feel. I had an Intralace System fitted two months ago, after months of faffing around, feeling more and more demoralised by my ever-disappearing hair. So how have I found it - hand on heart?

Almost completely amazing! The thing that best exemplifies how it has affected me is that two weeks ago we went to a wedding. Before this, I would have avoided photos like the plague - I am 65, so the (sadly) natual ageing process and the diminished hair combined, led me to feel I looked like some ancient crone. However, at this wedding, I didn't quite rush to the camera, but was perfectly happy to be snapped. Yeay!

The joy of the System over a wig or topper (not that I have had either) is that it is a prosthesis, so stays put - no more worrying about windy days (I so recognise your feelings) and blends in completely with your own hair. My confidence has grown and grown - and this from someone who is known for being strong and confident in general. FFA just knocks the stuffing from you, I know.

I am assuming you went to Lucinda Ellory - that's where I went. They are GREAT - taking so much care, and normalising the whole thing, which also helped me come to terms not just with the solution, but the condition itself. I am unfortunate, not a lesser person, just because my hair follicles have been attacked and destroyed.

The day after I had the System fitted, I found a slight problem in that the colour of the Intralace hair piece (entirely at the top and front for me - not the back or sides) was slightly out with the rest of my (dyed) hair. Lucinda Ellory could not have responded better and sorted it out immediately.

So what are the downsides? Cost - it ain't cheap. But, for me, I would rather spend my money on this as it makes me feel so much better.

Haircare takes significantly longer - before the FFA I was a wash and go type person. I have naturally curly/wavy hair which really didn't need even blowdrying. The FFA stopped that, of course. And now, with the Intralace System, I have to plan haircare into my day (probably lots of women already do that anyway!). My hair is short and when I wake in the morning I look like a coconut, with the Intralace hair stuck up on end and my own hair flat at the back. Not a good look! But a bit of water and brushing calms it all down.

Hair washing definitely takes longer as I now use various products and have (for me at least) the undoubted struggle with the tape that sticks the front of the System to my forehead. It is so very sticky I find it somewhat hard to manage.So I have learned to allow time for that, rather than attempt it when I have two minutes to get out of the house.

The only other vaguely challenging thing for me has been to get the style right. If you have straight hair, medium/long length or in a bob, it would all be straightforward, I suspect, but my hair is layered and short. Initially, the Intralace hair was just too heavy - it's a very different hair type to my own, and although we now have sorted out the colour, it still responds differently. However, my own hairdresser has now thinned it out a bit, and it looks great - no one would know it wasn't my own hair.

And that, Terry, is what makes it all worthwhile - I have my hair back. It might mean I have to place a greater focus on my hair than I needed to before FFA, and it might take time to get exactly as I want, but I look like me again, wrinkles and all!

So, if you can afford it, go for it. In the immortal Clairol words - you are worth it.

And if you want to talk, I am happy to do so - not sure how you organise that on this forum, but I am sure we can do so. Might help you.

Good luck - and have faith .... it can, and will, get better. Just by going for the consultation you have started to take back some control over this horrid condition.

Denise x

Whoops! Just realised how long my post was. Sorry everyone!

Denise

Hello, and thank you.  I am going to try out World Hair Institute in Chicago early May and will keep all posted.  I presently have a pretty good topper but am unhappy for summer, working out, etc. and am interested in the intralace system.  I tried Lucinda Ellery but they are nowhere near Chicago and I cannot maintain a system long distance.  I requested a referral or resource from them, but they would not help as they said they could not vouch for anyone else.  It was through this discussion that I found the World Hair Institute.  I will let everyone in the Chicago and/or Midwest area know about my experience there checking it out and seeing if they can manage my appearance in an easier manner.

In terms of my general appearance, it seems very few people "know" except for the very few I have told; my topper is very expensive, high quality and I am appreciative the vendor I went to is experienced, sympathetic and has many options available both financially and aestetically.  

However, now that it is Spring again, everyday is a challenge.  Somehow dead cold winter makes it easier to look ok and not worry about the piece.  But spring and summer wipe me out and I have pretty much stopped working out, being healthy or doing what I should and love and want to do as I am ALWAYS worried, never feeling natural, and embarassed.  I can't even stand being alone in the house with my husband without my pieces....I do, of course, but when I wake up and walk past the mirror I cannot believe it is me there.  Between the increasing recession around my whole face, the different color of my skin, the thinness of the rest of my hair, and lack of eyebrows, I am pretty much beside myself.

OK, enough whining.  I am at work, with my piece, no one knows and I look OK.  I am not sick and no one died.....all good.

I understand and agree.  Out of everything that might have happened to me -- especially as a good looking, pretty healthy, still working woman with a load of self esteem (which is pretty much exhausted now!) and one who thought she would age gracefully, this is beyond disappointing and difficult to even imagine that it ever could have happened or that it exists.  The smallest things, besides physically perspiring, sun, wind, going on boats, always wearing hats, impossible!  And having sleep overs with grandchildren, or traveling with friends and family, sharing spaces, everything is changed.  No good answer to this except again, be grateful nothing life threatening.  I am a breast cancer survivor of many years, but this knocked the shit out of me almost as much.  I got through that and there was an end in sight.....unlike this!

Yes you can go through airport security with a hat or metal clips attached to your topper.  I have not had any trouble in this regard.  I would say your first step is try a clip in topper.  I have one made made from human hair for two years.  They styled it for me, it matches my dyed hair beneath, and it looks cute.  It was expensive, but no one can tell as it blends in well and I have taken excellent care of it (the shop where you purchase will teach you).  Whenever I see someone I haven't seen for a while, they say how cute my hair is (it makes me laugh, actually!).  And, on a day to day basis, it works.  It is just the other stuff we have been discussing.....the topper is so expensive I don't want to chance wearing it in a situation where it might get wrecked.  So for those days I purchased a synthetic one but I am not happy with that for more than one hour or so.  It looks fake to me.  That is why I am hoping this intralace system works.  

Good Luck! 

You never know......

I am sure our paths will cross again during this discussion.

Hi Terry

Would be more than happy to talk on the phone if it helps. With the best will in the world, I don't think people who haven't experienced hair loss like this can understand. I certainly didn't before it happened to me.

And as a fellow youngster of 65 myself, I know being older doesn't make it any less painful. It just adds to all the other feelings associated with the years piling up. Everyone talks about older women becoming invisible - well FFA makes you either more invisible as you look so much older than you are, or the exact opposite as people stare when the slightest gust of wind (or, as I experienced, a white knuckle ride at Chessington World of Adventures) whips up the carefully hair-sprayed arrangement to reveal the Magnificent Balding Lady. Old Lady. And it's goodbye confidence.

One thing I do feel now, though, and have posted about before, is how different I now feel about having FFA. I didn't fully realise how much it was impacting on my whole life and how I felt about myself until I went to the hair clinic. It took me ages - literally ages - to begin to talk about my hair disappearing even to friends and family, and night after night I would lie in bed increasingly anxious and down. Then, when I had to admit it, it took another age to do aything about it.

Going to the consultation was a turning point - partially because I knew quite quickly I wanted to have the Intralace System, but also because it normalised the whole situation. I was not the only person with this horrible condtion and nor was it the worst thing that could happen to me. Most of all, though, it shifted my perception away from self-disgust and dismay into an acceptance that IT ISN'T MY FAULT! It's a pain in the a**e and I obviously wish it wasn't there, but it is nothing to be ashamed of. So now I talk about it (not to passing strangers, although after a glass or two, who knows?) and I try hard not to feel down about it.

Another long post - I just want you (and everyone else who has persevered with this marathon post) to shift, just a little, away from the negativity that so easily dominates when you have FFA.

So Terry - if you want to talk I am here. Keep on using this form - for me it helped/continues to help. And keep on believing - that there is a solution for you, and that FFA is not who you are. You are you!

Denise x

Denise,

I have some questions:  The intralace system is combined through the web system with your own hair, correct?  And what about the hair that is missing back from your face and around your ears; is there enough hair there to connect?  Are there tapes holding it down on your hairline?  As I said I will be seeing someone here in Chicago (although I have trouble finding reviews, so I feel like I am going in blind) but want to be prepared for how the system would work. In your earlier post you made it sound a bit uncomfortable.  Is it authentic hair?  Can you wash and style it often, swim, work out, perspire, let it blow in the breeze?  How often do you do back for maintenance?  And what does maintenance mean? Thanks much.

Thanks for your insight.  I will add to this discussion when I have my appointment.  Fingers crossed it is a system that meets expectations and works for me.

Hi Sad in Chicago (maybe soon to be happy in Chicago?)

It's pretty well as MnM says - and yes, I can do anything at all in it. They cut the Intralace according to where you need it, so if you need it at the back (I don't), then you get Intralace there, too.

Sorry if I made it sound uncomfortable - I didn't mean to, as it isn't.Unless I think about it, I am not aware of it on my head at all. And now I have sorted the colour and style - and will stick with this - the only even-vague issues are applying the tape, which I personally find a bit hit and miss (but hope I will get better with experience!) as, by necessity, it is very sticky, and the increased amount of time I spend on my hair. But that is from someone who, pre-FFA, did a one-minute wash in the shower and then just left it. Oh - and looking like I have seen a ghost first thing in the morning! Bed-head extreme.

The one thing that is different from the system MnM describes is the hair they use. Not sure about the USA, but in the UK it is very, very expensive to buy human hair from the West. So the hair that Lucina Ellory uses is from the Indian temples. It is fine - somewhat different texture to my own, but now it is styled correctly, no one would know. And it is very shiny and healthy looking. No problems at all. But I would ask.

Other things I would ask include:

• Depending on how bad your hair loss is, how do they match to your own hair? (My System is just at the front, not back, so it needs to blend thoroughly. If you are having new hair going over the crown onto the back, it is less of an issue.)
• The real cost of ongoing maintenance. I suspect that once you go with a system, you will want to stick with it - forever, so on-costs are really important.
• How long the new hair will last. Because it is not getting any nutrients from you, it needs more care and 'feeding' from a good mask/conditioner (they should give you that), but will inevitably not last. So how often will you need to replace the hair (not the system).
• How often will you need to replace the whole thing? Lucinda Ellory says two years. That is a larger expense.
• For me, I have to go back every six/seven weeks to have it tightened, as my own hair grows. That costs me around £75.
• Colour - the new hair is chemically treated, and its colour has stayed stronger than my own hair. I have resolved this with my own hairdresser, but if you have your hair dyed, it is certainly something to discuss with them.

Think that's all. Another long one from me.

Denise

DeniseC, thank you for all of this information.  I thought about this system, and would like to consider it, but when I think of the expense, I shudder.  Those of us not living near LA or London, would have to add travel costs of expensive flight to even do the maintenance on such a system.  Sad in Chicago, I will be interested to find out what you learn on your appointment.  

Thanks everyone...I am trying to manage my expectations but hoping very much that this could work.  As I have said, my topper is good quality and no one knows, but it is lifestyle that is getting in the way.  I am always messing with it, but it sounds like I will always need to mess with the "system" too.  However, I was always messing with my own hair before, so what's the difference?!  Stay tuned.....

I was at a Rihanna concert recently and I noticed that she kept pushing down on her hairline with her fingers while on stage. She must be having some issues too. 

Funny!

Hi all

Just got back from my first maintenance appointment at the Lucinda Ellory clinic - as your own hair grows, it pushes the Intralace up, so it needs to be tightened. All fine and dandy!

I saw one of the owners/directors, so asked him if there were any plans to extend their US presence - they currently have clinics in LA and NY. Apparently, they are very keen to extend their geographical area, but of course it is a major step for them as they are a UK based company.

I did tell him there were loads of people on this forum who might well be interested. And, Sad in Chicago, just for you, I said Chicago would be a good place to start!

Denise

hi Liz

Not so far - but I have only had it for six weeks. It still looks exactly the same as it did. In terms of what I do - I follow what they said, so wash with the stuff they gave me, then put the hair mask on and leave (sometimes for up to 30 minutes of so - soak in the bath with a book!). Then spray with the 'magic spray' and put the heat mask on. I try not to use a hairdryer on it - I scrunch dry my own hair with a dryer (it needs the 'lift') but leave the System bit to dry naturally. And I don't use straighteners.

I would ask Lucinda Ellory for advice.

Good luck!

Denise

Thank you Denise!  

Hello ladies. For some tome I haven't been able to post and could not log on. It's bizarre since it was I who started this frontal fibrosing alopecia group on Alopecia World back in 2012. Today I managed to log on again and it's heartening to note tat so many ladies are still communicating..

I haven't kept up for a very long time, but I hope there are some people out there who may remember me ! I haven't taken any medication for at least a year. I didn't want to trigger anything else !

I was diagnosed in 2011 at a . time after an illness that meant that I took serious antibiotics.

I've lost hair above my ears and about3cm from my hairline. I have my eyebrows tattooed thanks to Deb who introduced me to Belinda Hayley in Chertsey.- she does my brows every 18 months.

I see Dr Ali at Charing Cross Hospital periodically.

All stressful but try to enjoy life anyway.

Thank you, Liz. I've been able to see how you are, but unable to comment until today when I was given a new password. What is noticeable is how many younger women are experiencing FFA.

Great to hear from you Celia. I to havent posted for a while. My hair loss has got worse and is noticeable and  I am undecided as to whether to have a hair piece or go down the wig route. But like you I am just trying to get on with life and enjoy it. Hope you are well. 

Hi Meme it was good to meet with you albeit ages ago over in my home. So sorry to hear that your air loss is continuing I hope to have another get together soon and would love you to be here..

Thank you Celia, I found the get together a real help last time so would definitely like to come again. 

Hi Celia,

Thank you for starting this for starting this online group. It has been very informative for me. reading these stories has made me feel less alone and more calm.

Hello ladies, having just got back on this site I am hoping I haven't lost contact again since I cannot view any posts after Jen's on April 25. Best wishes, Celia.

Sounds great ! Well done !

Hi Sad in Chicago. I have the natural hairline in my intralace system and I'm really impressed with it. You'd never know that it wasn't my own hairline x

Liz that sounds good. You have contributed to this site for a long time. It would be great if you were able to come to  a get together. This awful problem seems insurmountable and we don't know why it happens

.

Liz do you take meds any more ? I haven't been able to access this site  for a while and in a way I have been able to go into denial. That way you don't feel the pain that newcomers feel. On the other hand you can't access the good info.

Hi Celia. I don't take any medication. I had an intralace system fitted back in December and it has allowed me to forget, to an extent, my FFA. It took a little bit of getting used to because it takes a fair bit of looking after but  I get up in the morning, spray some moisture spray in it, brush it and go out knowing that nobody has a clue that I have alopecia. The wind no longer bothers me either. Next week I am off to Guys hospital with my mum to take part in their FFA research xx

Hi all - especially Sad in Chicago ...

I am soooo pleased you have started your journey towards 'new' hair. Last time I posted, directly to you, I ended my message with something about you hopefully not being 'Sad in Chicago' for much longer. Well, I truly hope that is now coming true!

And I hope your system is as good as my Intralace one - as Liz says, it makes such a difference. Yesterday, we had ten people here for a meal. I had been cooking and pottering around and needed a shower and hair wash. My daughter (grown up) arrived and told me I looked great and that my hair (system) had 'settled in'. And it has. It just looks normal now.

Obviously I wish I had my own hair - and like everyone says, FFA is a pain in the proverbials. But, this is a solution I can live with.

And Celia, I too, am taking part in the Guy's research. Anything to help get a cure - or at least an explanation.

Denise

I am so glad to be able to post here again. Diagnosed in 2011 and started this site on Alopecia World in late that year. We now have 320 members. But no real solution. I think now the 'solution' is to stay healthy and find  as Sad in Chicago did -  a place that can create some cosmetic ways to hide the problem. Until, someone discovers a way to do hair transplant that works permanently.

Thanks all for your support.  I am trying to manage my expectations while waiting so long for the mold and piece that will hopefully become "me".  I can't even imagine having a hairline and sideburns!  12 weeks is a long time, but hopefully, worth the wait!  It was amazing how much more loss I have as I do my best not to look and keep combing everything forward.  When the size of my new hairline became apparent to me I freaked out again.  But, hope on the horizon!  (PS - who has cyberhair, synthetic, or real?  Which do you prefer?  Liz, yours sounds like cyber --- the stylist I met says it loves water!)