I hope he answers you. I started Plaquenil this morning. The derm made it sound like if you can get the inflammation under control you can prevent further hair loss. However, everything I read said that even if you could control the inflammation, the hair loss can continue. That doesn't actually make sense -- why take all the meds then? I would just like to hear from one doctor that it is possible to prevent hair loss. I am like you, I am in the best condition in my life, with the least stress. The only thing now that is causing stress is when I do my hair. I am hoping that one day I will get to look in the mirror again and not think about going bald. Even though I may not look different on the outside, I feel like I have a secret on the inside that keeps me from being like everyone else. I look at everybody's hairline now. No one is safe.

I feel like my hair loss has slowed down but not probably done. I haven't had the red itchy inflammation in my scalp in a while now, but it still is very dry and I use a medicated shampoo to help control that. My hair texture has changed somewhat thought, it used to be very curly and thick, but now is thinner and flatter and frizzy on the one side that has had more hair loss, but more normal on the other side. Very strange! I haven't lost any other body hair other than a patch on one arm. I wouldn't mind not having to shave my legs! My remaining hair seems to still growing at a normal pace. My scalp is strange in that I have a small strip of hair growing at the front hairline and temples and then the bald part starts and goes about 2 - 3 inches back. That is the hallmark of the "Frontal fibrosing" type of alopecia according to my doctor. Is the same with the rest of you? I'm not doing any treatment for it since my dr said it was unlikely to grow back. I guess I should at least be happy that I don't have Universalis and still have some hair left. I feel also like I have a secret to hide and don't want anyone to know about. My husband & kids are supportive, it's just when I'm out in public or with acquaintences who I haven't shared this with that I'm uneasy. I know people can probably see the bald shiny skin under my bangs but I don't know what to do about it other than wear a hat. I'm not really ready for a wig or partial wig, or head scarves. That would just call more attention to myself. I can wear a hat outside it it's windy or sunny, but inside it would just look weird! and this summer has been so hot that I sweat like crazy and my hair just looks a mess anyway!! I can't wait for fall and cooler temps!!

Celia I did read the article it was interesting, i wrote to Dr harries at the weekend. i don't know if he will reply , I hope so! Karen, my hair line just looks like a mans receeding hair line. My fringe covers it at the moment, but it is getting thinner every day, not sure how long I can hide it for.The rest of my hair is growing normally I still have to colour the grey roots every 4-6 weeks!

Sandy, I added my profile pic (before FFA). Anyway, before I even had a diagnosis my friend recommended Bosley Shampoo. I bought a trial size to try it and it really does add volume and body to my hair. It is very expensive so I bought a trial 30-day size first at a local spa/salon. I liked it and found it on Amazon at a much better price. They have a formula for color treated and non-color treated. I will post wiglet pics next week (after stitches come out from the skin cancer).

My friends who went with me today said that the wiglet is hardly detectable. I will know soon enough I guess. It gives me just enough volume at the temples and bang area where I am thinning. I don't want to wait for it to become an issue so I am taking care of business now.

Here is a link for the product. My stylist is ordering it from this website and then we are going to cut and trim it so that it fits my haircut and hair. It doesn't feel any different than wearing a head band. Watch the product video.

http://www.wigs.com/product_info.php?products_id=4506

HI all,
I went to CARF this weekend and it was good. I'm a bit numb.. its hard to be in denial when you are surrounded by others with your disease. There were lots of women with FFA,a nd the news was that the docs are seeing more and more of us . they wonder if there is an environmental link... it seems more prevalent in some parts of the world than others.. or maybe people in other parts simply aren't bothered as much as we are.. who knows
It also seemed to me that there are two categories of people with FFA - those who are trying to fight it with whatever they can ,and those who have either given up and have had their disease 'burn itself out' - their words, not mine- and refuse to take anymore medications for it, except those to comfort the pain or itch. most of those are using hairpieces or wigs. there is alot of emotion around this disease,and many are finding help in local support groups that are cropping up. two others and I are starting up a group in Canada at the Skin Matters conference in Toronto in October, where we'll invite hair expert Dr. Jeff Donovan to speak to us about research as well.
one woma talked about doing a medicine life chart... documenting all the medications she'd taken in her life. Others talked about diet and environment. The doctors there hypothesized that there might be some environmental trigger, but also a genetic factor There are those who think that the way to find better treatment or a cure is via finding what 'causes' it and others who look to the biochemical processes involved and studying them to find a cure or treatments.
I left with mixed feelings. There are others like me, and there are some very dedicated people working on it, but I didn't sense we were anywhere close to finding a cure. There was laughter and tears and sometimes both at once. it was very good to be face to face with some lovely people.
I was also struck by how our experience is so similar to that of other patients with skin diseases.
I tried on a wig, I learned about hair pieces and weaves and met a woman who makes her own wigs - truly cool... I wasn't really ready to face that stuff yet... I'm a bit numb today.
that's my initial report. I'm sure I'll dredge up more int he coming days.

Thank you, CJ, for sharing your experiences. I was really interested in your comments about those who are fighting and those who have given up. Did you meet anyone who is actually winning their battle? I am wondering if it is even worth fighting FFA with drugs if the hair loss will continue.

Thanks for posting your take away from the CARF conference, CJ. It sounds like alot of information with little in the way of conclusive evidence that there is an obvious direction for treatment. . . what constitutes "burn-out" I wonder? I'm really interested in knowing if this would be a time frame or just when the hair in the frontal region is just, gulp, gone. I am going to see Dr. Victoria Barbosa in late September. I believe that she was participating in the conference talking about the Chicago support group—did you see her? Anyway. . . thanks again for your post.

Thanks CJ, for your summary of the conference, I was really looking forward to your feed back. I know you didn't come away with a miracle cure but I get some satisfaction that the info we have got is up to date. My worry is in years to come someone will say if only you had done that you would still have a full head of hair! Within your job role you are in a unique position from the rest of our group as you have a personel knowedge of what is out there and the organisations that deal with hair loss, we are lucky that you have joined our select group!!! Thankyou x

My thanks also to CJ. It's nice to know that people are aware of it and trying to figure out a cause and hopefully a cure. I think mine is related to my auto-immune system being out of whack. I've also had symptoms of arthritis - pain and swelling in my hands and feet, and an increased ANA count in bloodwork, which has been that way for a year now. I go to see a rheumatologist in a week and hope to find out more about that.

just a quick response to all the comments... celia- some people are also taking celcept ( sp?) and doxy is short for doxycycline - usually taken in combo with plaquenil. Most are also on some topical or combo of topicals, like clobetasol and protopic.
Karen - the docs there were starting to imply that FFA and cicatrical alopecias may not be auto-immune diseases as originally thought. I know that arthritis is inflammation and FFA is caused by inflammation - so inflammation may be the link. I think its worth you discussing all the pieces with your doctor though.
Chris - burn out here seemed to refer to the diseases just stopping - for some when they had lost 70% and for others when they had lost less than that. I don't know that there was anyone there who had minimal hair loss, had taken no meds and had it burn out with minimal hair hair loss:-( Dr barbosa was there and she seems right on the ball.. you are lucky to be seeing her.
Pam - no - I couldn't really see anyone who radiantly , confidently said they were winning the battle. darn. there were people who had come to a place of acceptance and they were OK with having the disease.. and many of those had found wigs or whatever to cover their bald spots. I too wonder the same thing - is it worth fighting something that will win in the end anyway, and put our bodies at risk for all kinds of other nonsense in the process.
I'm feeling really low these days, quite unsure of which direction to go. Plaquenil makes me nauseous and gives me diarhea - not sure I want to go to the next level. I di get my shingles vaccine yesterday just in case I do go on immuno-suppressants like celcept though. Sigh.

CJ - thanks again. I am wondering if the people who attended and the people we are communicating with are the ones who are not responding to treatment. Perhaps if you were responding you wouldn't be on the internet or at conferences looking for answers because you already have them.

For me, I need to do whatever I can to save my hair. If I can't take the drugs or tolerate the "cure", I will have to wave my white flag and give in.

I think we have to do things to make us feel good. I don't want people noticing my hair loss so I am going to wear something -- even though I don't need it, but preparing myself for the inevitable. It doesn't make me feel good to begin my day trying to fill in eyebrows that are barely there, so I am getting tattoos. It doesn't make me feel good to try to fluff up a receding hair line, so I will clip in my bangs and get on with it.
And, if it doesn't make me feel good to take Doxy and Plaquenil twice a day, I will stop.

I am mad as hell that I have to get a disease that no one knows what causes it or how to fix it. I am so grateful that I found the seven of you!

I am wondering if the inflammation could be caused by a variety of reasons, for some it is metabolic (which is why Actos works) or if it is auto-immune which is why Cellcept works.

good idea about the tattoos. there were several folks there that had them. the best ones by far were the ones that had some whisping or texturing in them. I know where I live there is an artist who does it. that said my derm has dissuaded me from having it done yet as he is giving me injections in my eyebrows every two months and there is a small study where people actually had hair regrowth in the eyebrows ONLY from the injections

DSCN3053.JPG

I had quite a few days - eyebrows and hair. I am uploading a photo. My family says they can't tell, but I guess the test will be when I am with friends and coworkers. Wish me luck.

Pam, it looks really good! It's very hard to tell where the real hair ends and the hairpiece starts- I mean, I can't tell. I don't think anyone would know. It has nice color and natural looking highlights. How long can you wear it? could you sleep in it? I might need to go that route sometime in the future, and I hope mine looks as nice as yours!

Oh, man! I can't believe I had the nerve to post that photo -- but I wanted you to see. It is a really good color match so when the wind blows you mostly see my bio hair. I think that if you looked at me closely you would know it is a piece because of the part -- it is just so small. My bio part is wider. Also the crown part is flat -- I don't have volume. Now, having said that you'd have to be staring at me to tell. For Open House when parents are staring at me I will put a head band on or something to break up the scalp line. Does that make sense? The gal where I purchased this has a website and she sells to people all over the country. She is a wig wearer herself and has many videos that are so instructional as part of her website. Her business is Patti's Pearls. If you do a google search you will find her.

I don't think it is hard to look good now -- the test will come after it has been washed a few times. The piece is human hair - Remy hair (whatever that means).

I know I don't need anything now, but I just don't know what a month or two from now will bring and I am hoping just to fade into the background. If I wait, wearing a piece will be so noticeable. I don't know why that bothers me. People have false teeth, fake eyebrows, fake boobs -- but fake hair is not cool.

I didn't answer your questions. No you can't sleep in it. It clips onto your head and I would think that it wouldn't be good for your scalp to sleep with it. It takes two minutes to put it on. Remember the first few times you put contact lenses in? It took forever, and then you get to be a pro. I just give it a comb and mostly use my hands to smooth things around.

Pam it looks great! I went on the internet and ordered a small real hair fringe with side bits. It was a cheap one from amazon £15.99, my daughter who is a hairdresser is going to colour it to match mine. I thought I would try it, although I don't need it now I want to be prepared! I'm also using it to experiment, if I need a larger one or could I adapt it my self etc. My daughter always wears clip in hair extentions so she is familiar with how they work etc. Once I get it sorted I will also put a photo up.

Hi, friends. I went to work for a few hours a day and have seen many of my colleagues. Most just said hi and didn't even notice. One said that she liked my hair. No one has noticed. The only thing is that by the end of the day, I cannot wait to get it off. It feels like you are wearing a hat all day.

I am going to the derm later this afternoon for a check up. I was also referred to a hair specialist, but I am waiting to be able to make the appointment because paperwork has to go in.

I have a question -- most of the real loss has been at my temples and bang area. However, I am noticing thinning in the center part. Has anyone experienced this? I am just hoping that I am not going to get more bad news this afternoon.

Thanks for any info you can give me.

Hi Pam, thought I'd mention that I similarly have been thinning on top. There is a spot to the right of my part that is quite thin. . . so far I can cover with the way I brush my hair. I guess that there has been a general all over thinning. I set my hair on hot rollers almost daily and used to have two full rollers on either side of my head. . . and now the hair fits easily in just one roller per side. . . sigh!!

I went to a hair specialist to get information and she showed me something very similar to what you are wearing in the picture. However she was thinking that I should consider a full wig when I'm ready so blending is not a problem and for ease of use. I'm sorry but I can't imagine that yet.I have another appointment with another hair specialist in mid-September that does hand-tied hair pieces—we'll see what he recommends. . . as well as an appointment with Dr. Barbosa to get all the facts that I can. Will keep you all posted.

I continue with the Finestride, Minoxodil and Clobeteso Propionate. . . not sure how long I should continue with the steroid drops though. . . it does thin the skin. I want to keep the inflammation down as much as possible.

Ladies, I am so amazed by your comments because we all have the same disease and we have are all being treated differently and I think be given different information. Here is the latest info from my dermatologist (as of yesterday):

I had another round of steroid injections and she thinks that my hair loss remained the same (no change). I feel like I thinned more on top (center part) but she disagrees. I am getting my hair cut today -- my hairdresser will know for sure.

I continue with the Plaquenil and Doxy. I only use the clobestasol foam when I am itchy. Celia - do you use it every day whether or not you are itchy?

My doctor said that the hair falls out because the follicle has already scarred. Once it is gone -- it is gone. You can't bring back your hair but the thought is to control the inflammation which causes the scarring. Why is there inflammation in the first place? No one seems to know. Some think auto immune, some think some kind of hormonal trigger, and some think toxic lipids because we are not processing carbs and fats properly.

I had crazy liver tests for the last few years and this month for the first time in years I had a normal liver panel! Yea for me.

The derm also told me that they really don't know if the meds help or if it is the patient that just gets better. Some people stop losing hair after being treated with plaquenil and some people don't stop losing hair even on the meds. And from what CJ said after going to the conference and meeting people with FFA, it doesn't sound too promising for us. I just can't wrap my head around that yet. I feel like I have to be hopeful that my hair loss can be stopped. I was referred to a Hair Specialist and am waiting to get an appointment. I will share any info I get.

In the meantime -- I love, love, love my eyebrows. I am less than thrilled about "my new best friend". After a few hours, it does feel like I am wearing a helmet. But, if I don't wear it now, I risk causing a major upset in my classroom and community if I suddenly walk in with new hair. My daughter told me to do what pleases me and not care what others think. Where did I get such a wise daughter from?

Thank you ladies for supporting me.

Now about my new bes

Hello everyone! Pam that's great that everyone thought your "new" hair looked nice, they probably didn't know it wasn't your own. On the hair thinning topic, mine has thinned all over but mostly in the right side of my head with a very thin patch on the upper back right side that I try to cover by combing my hair that way. My part seems thinner too but not too bad. But the worst part is the whole front hairline and temples, pretty much bald for 2- 2 1/2 inches back, maybe more. I do have a thin strip of hair at the beginning of the hairline, but my hairstylist suggested shaving the front part so the rest of my bangs blend in better. And of course that part keeps growing back. My hair has also been growing all over the rest of my hair at a normal rate. I've been letting it grow longer this summer and now I need a trim. I've also been coloring it as I normally do, I don't want to be grey and bald! I did start using Nioxin shampoo and conditioner for thinning hair, so I'll see if that helps. I'm not doing any other treatment right now since my doctor didn't really suggest anything. Hope everyone has a great weekend! We may go to our local Air Force base Air Show tomorrow and Sunday we have a Boy scout picnic we're helping at. Oh and I went to a rheumatologist to ask about the swelling and stiffness in my ankles and feet and he thinks it's a reaction to my blood pressure meds and not arthritis like I'd thought. So it wasn't as bad as I thought. :)

Who said you are not photogenic?? You are beautiful. I wear my hair the exact same way. And, I am glad that I know what you look like. When I saw your picture I thought you were wearing hair because you cannot tell you have hair loss until you pull it back. I wear my hair exactly like you. Hmmmm . . . maybe I won't bother with my topper???

I have just been diagnosed so I am not as far along. I have loss more at the temples.

I haven't had a day without something involving my hair. Today I went to my hair stylist who said I stayed the same and I shouldn't wear the topper because I have plenty of hair. Also I waited over a month for my insurance company to approve a referral to a hair specialist. The referral came through, but when I called for an appointment I found out that she isn't accepting new patients. Back to ground zero.

Hi folks, I've been quiet for a while as we are trying to pull together a great programme for our skin/hair conference in Toronto this fall. There will be a section on FFA, in case any of you want to come up and hear from Dr. Jeff Donovan, a researcher in the field.Also sessions on self esteem, effects of these diseases on our families, what to do about staring, sexuality. check out the little video on youtube http://www.youtube.com/embed/_S74MyA_HFA
I'm in there in the middle section - you will see my hair all forward covering the hair loss.
Mine is like yours Sandy, although I think my forehead may be further up.
I can't face teh idea of a topper or wiglet yet. I had a horrendous meeting with a dermatologist a few weeks ago.. she basically said this is no big deal, suck it up and get a wig. I was so upset , I haven't been able to talk about it. She suggested that I shouldn't have gone to the CARF conference because that just filled my head... also it was only for people with 'serious' disease. Mine isn't that bad yet, but I fear what will happen if I don't try to stop the progression now.
anyhow, check out the video and if you like it, please 'like' it . we are raising money to be able to cover the costs for people who can't afford to come to the conference. Also if you can, please send it to everyone you know! thanks for being here!
Christine

Hi, CJ. I liked your video, too! I agree with Sandy, your hair cut is good! Everyone wears their hair in the way that flatters their face! I think it is awful that the dermatologist made you uncomfortable. Mine is so encouraging -- she insists that if we can manage the inflammation, we can manage the hair loss. I just wish I had HER confidence.

I have really, really wrestled with wearing the topper and I have come to the conclusion that people can either notice my baldness or notice my hair. Which would make you feel better?

Sandy, if you are looking into the easi-fringe, you should definitely try things on in a shop first. They will have color wheels for all the different wig manufacturers. If you have a bad experience with one -- try another!!

CJ - I live in San Diego and teach so making the trip to Toronto is not possible for me, but if you could keep us up to date that would be great. I would just love to hear from one of the doctors that it is actually possible to manage this disease. Just one success story --- just one!

I've been reading about auto immune conditions at the moment. It seems that they most likely are caused by toxins in the environment (based on a good book called 'The Autoimmune Epidemic'. Frontal Fibrosing Alopecia (which I'm sure I have) is an autoimmune condition strangely linked to hormone levels. I wonder if anyone with FFA has gone on a detox diet and noticed any improvement. Would be interesting to know.

Pam - I've looked up the hair pieces you were talking about - easifringe or easibangs, and they look interesting. I just wonder if it is comfortable and like you said it can be hot. I just know it would give me a headache from having something on my head all day, but if it made me feel better about how I looked, I guess I could suck up a little pain right? Since I am a stay-at-home-mom, I wouldn't need to wear one all the time, just only when I went out. I've just gotten used to bringing a hat - baseball cap with me if I'm going to be outside in the wind. I suppose you wouldn't want to wear one of those if you went swimming right, I would be afraid of it coming loose and falling out.
CJ, the conference would be very interesting to go to and meet others with the same condition and talk to the doctors. But unfortunately I'm in Iowa and can't afford that kind of trip.
Ellauk - I've wondered myself if a change in diet would make any difference but not sure what kind of changes might help. I am 47 and pre-menopausal and have thyroid issues too. So I'm sure hormones probably have something to do with it.

I've been reading so much about frontal fibrosing alopecia and all it's relatives.. A new thing I've heard about is 'biofilms' that may be part of FFA. There seems to be a common thread though.. that it's an autoimmune disease which leads to the questions.. what causes the autoimmune disease and how do you treat it? My feeling is that it is heavy metals and toxins in the body that have confused the immune system causing it to attack invaders. I know that bio films have been found in hair folicals of people with hair loss.

It would be good to know if anyone has been on an elimination diet with the purpose of removing heavy metals and toxins (including chelation) and seen a change in FFA symptoms.

I personally have found that taking turmeric daily has helped calm down the redness around my hairline.

I also saw on the news recently that they think they will be able to 'cure' male pattern baldness in about 2 years' time. However, that doesn't help me if my hair follicles have been destroyed completely.

1. Has anyone cured their FFA with a detox diet?
2. Can vellus hairs become terminal hairs?
3. A single tab on this site with scientific breakthroughs please
4. Would any dermatologists/trichologists contribute to this site?

Thanks for reading.

Ella x

Hi everyone I haven't been on for a while. I was waiting to hear from dr Harries unfortunately no reply yet! Hope the move is going well Celia where are you moving to, I live in Taunton Somerset, are you any where near and Ellauk where are you? Ellauk I looked into diet a few months ago ,but mine was the acid/alkaline diet which states that your body works at its best when it is in an alkaline state, It was trying to make your body work better to repair itself. I did it for a couple of months, but no change, I still try and eat more alkaline foods than not but I'm not so stricty with myself now. My initial panic of loosing my hair is now over and a sad acceptance has taken its place! At the moment people can't tell except when it s windy. I think It's going to be along time wearing a hair replacement so I personally am going to put it off for as long as possible!

Hello Heidi and Celia. I take turmeric tablets from Healthspan.. one a day (although you are supposed to take 2 a day, but it's too expensive). I really believe FFA is an autoimmune disease like lots of other autoimmune disease. I think ridding the body of toxins or allergens is the only way to stop it. So I'm eating a gluten free diet. I'm going to research a way to detox properly, with the aim of ridding my body of heavy metals. Anything that can help with inflammation is good. So I take turmeric and green tea tablets. Cutting down on sugary foods helps to dumb down the irritation too. Stress is a big thing.. but controlling that is easier said than done. I live near Newcastle upon Tyne.

Hope everything goes smoothly with your move back to the UK Celia.

Hugs Ella xxx

My liver enzymes were not normal all summer - which meant that my body was not filtering correctly. Also just yesterday, I read that taking NSAID's may trigger Lichen Planopalaris. I know that there is an anti-inflammatory diet -- no sugar, sugar substitutes or animal fats. I finally have an appointment with a derm who treats alopecia. The first available is November 30! Can you imagine having to wait so long? CJ - how is the conference coming along?

Gave up wearing my topper. Too hot and everyone said I am crazy -- don't need it yet.

Did you ever notice how many ads (commercials) there are for hair products on TV?

Oh my gosh , its so hard to know what to do... Pam - derms who treat alopecia are rare... its a problem all over. although most say they treat it, very very few specialize in it. Its crazy making.
As for the conference - I think it will be amazing> i'm hoping that there will be people with FFA and LPP ( which I also have apparently). We will have one of the top alopecia docs in Canada there. He is doing work with the international alopecia research community.
Liver enzymes.. hmm. that suggests something else beside FFA is going on, doesn't it?
I don't know about diet.. although at the CARF conference the research derms there - most notably Vera Price, said that they now believe that FFA and the other cicatricial alopecias are NOT automimmune like AA, but likely reactions to environmental triggers. therefore , all of us, at some point in our lives, maybe recently were exposed to something that triggered some aberrant part of our DNA to start the attack on the sebaceous glands and stem cells around our hair follicles.
I'm on another on line forum on Facebook for LPP and a bunch of people are on the paleo diet and some ( but definitely not all ) report that they have hair regrowth and fewer symptoms - redness , burning , itch- while they eat that way.
I don't understand how there can be hair regrowth - either its dead or its not dead.
i think the anti-infalmmatory diet approach makes sense.. I just can't bring myself to start tinkering with diet. I struggled with weight and diet issues for years and part of my cure was to stop dieting. My weight is fine.. i'm not skinny but I'm normal- ish and i'm afraid to start restricting food again.. it messes with my head... the inside of it, I mean.
ellauk - when was the book you are referring to written.. I wonder if the newer research trumps it or if it is the newer research?

I too am wondering if acceptance is part of the journey. I'm not there yet, but am inching closer. I'm not sure I'm willing to take all kinds of toxic drugs. I'm on plaquenil and it makes me sick. Doxycyline makes my skin all over really itchy.. I had to stop it.

that's enough chatter for now.
if you can come to our conference- anyone - I'd love it!

The book The Autoimmune Epidemic was first published in 2009 I think. I'm starting to think that a detox programme, including chelation.... proper detox is the only way forward for FFA. Anti inflammatories and stress management only treat the symptoms but not the cause. Sometimes I feel like shaving my hair all off. But I would have zero chance meeting a man then! ha ha

Hi everyone, it's nice to read all the comments. I guess that my FFA is probably related to auto-immune issues, but of course, I don't know that for sure. Last month I was having alot of trouble with my hands and feet hurting and my feet swelling up and being really uncomfortable. My regular Dr. sent me to a rheumatologist and he thought it was a reaction to my blood pressure meds and to take only 1/2 my regular dosage. And that seemed to help. I thought it was going to be rheumatoid arthritis, but maybe not. Ella, it's interesting that you are going gluten-free. I have looked into that but mostly because my 12 yr old son has autism, any many in the autism community think that following a gfcf diet has helped their kids. We tried it a few years ago, but it was hard since my son is so picky. But I would try it if I thought it might help with my hair loss. But I know the hair I've lost at the front is not going to come back. So I've mostly accepted that. Many people think that autism is caused by environmental toxins also. But in my son, it think there is a genetic factor too. It's all just so confusing isn't it?? I hope in my lifetime, some researchers can find a cure for all of these things.
I also wanted to say that I live in Iowa, in the midwest of the United States, and I have never travelled to the UK. But the neighborhood I live in is called Wilshire Heights and the streets are called Somerset, Essex, Victoria, Surrey and I live on Dorset Ave. I just thought that was kind of funny with so many of you being from the UK. Bye for now, Karen

Hi Everyone, am having a biopsy in a few days with a dermatologist to cnfirm FFA. Went to GP in Dec, very brusque and unhelpful. Just told me I had alopecia, didn't diagnose what kind, said no cure and sent me packing. I tried to get help at a private hairloss clinic in March, the lady there diagnosed FFA and told me to get a biopsy... It has taken since March for the NHS to give me an appointment. Since then I have lost about an inch from my temples and half an inch from my front hairline. I have purchased 2 wigs. Wore them both out last week for the very first time. I am trying to find and get used to wearing wigs now - so that in the future when I will have to wear them all the time I will have already done my experimenting to find something that is comfortable and looks OK. I have been told by the dermatologist that he will give me a high dose of a steroid cream!! I can see however that there are a myraid of treatments being tried and nobody seems to have a definate 'cure'. I know that for other types of alopcia some people have sucess with minoxidil... has anyone tried that? I am very interested to learn more about changing my diet to try and control the inflammation; but I don't know what foodstuffs would be a cause of inflammation to begin with... any info is most gratefully received. And, good luck Celia with your move, I am just up the road from you in Surrey, it is a lovely part of the UK you moving to. Debs xx

Debs - I would say I am at the same stage as you. I too have lost an inch from my temples in the last 6 months, and a bit less from the front. How did you go about purchasing the wigs? Living it rural Scotland I would find that quite difficult. Did you find wigs very like your own hair? How did people react when you wore them? Dr Matt Harries of Manchester University was quoted as saying that steroid cream is much less effective than steroid injections. Cream is difficult to use anyway - difficult to know how much of the head to put it on, and the hair needs to be washed afterwards. I have seen online that some sufferers are using Propecia - unfortunately not licensed for women in the UK.

The group might be much easier to get into if more use was made of Discussions. We could have discussions on wigs, medications, new research etc. It is frustrating trying to follow the different conversations that have gone on in the past. And, if I find something interesting weeks back, there's no function to comment on it or ask a question. I hope you don't mind this comment. I know we are lucky to have this meeting place - thanks for setting it up.

Hi ladies I've just had a reply from Dr Harries!This is what he said
As I am sure you know this conditionely is relatively rare and causes permanent damage to the hair follicle.I have recently undertaken some research looking at the changes to the immune system in active disease and this suggests that the hair follicle may lose protective mechanisms exposing the stem cells to inflamation and damage. There are a number of similarities with this pattern of inflamation with other auto immune conditions, although FFA to date has not been designated in auto immune conditions.There has also been research on a similar condition, lichen plano pilaris, in America which suggest that a lack of PPAR gamma in the skin may be a contributing factor. (I don't know what that means!!!)
Treatment for FFA is difficult and there is no clear consensus on the best treatment option. It is likely that the condition probably does burn itself out at some point but it is difficult to predict.
He goes on to say he thought the idea about a database was a very good one,infact he is currently in the process of applying for funding to set up a National Scarring Alopicia database, which will cover a number of scaring conditions including FFA. The plan is that this will collect data going forward about natural history of these conditions and also link this data with tissue samples (eg blood or scalp biopsies).He is also currently undertaking a questionnaire study in FFA and it is possible we could be involved with it.
He also wanted the name of our web site as it could be benificial to other patients, so we could have a few more members soon!
I was really pleased that he answered my letter, although no miracle cure yet, there was a few new suggestions on why it is happening, and encouraging that they are actively trying new ways to collate data.

This is great news. Personally though I don't think it is so rare. You seem to see quite a few people with jagged, thin hairlines. I personally think turmeric and green tea help lessen inflamation. I don't know if other people find that too.

Great that he took the trouble to reply. Somewhat depressing too, as his response in the newspaper article was the only positive one I've seen on much searching of the web. Now it seems he has no more answers than anyone else. At least if he gets his funding (and data from us) there may be hope for future victims. Any results would be too late for us, I fear. Thanks for copying the info to us.

Ella - I have drunk a mixture of green tea and ordinary tea for years and it hasn't saved me from this :-( I think I will give the turmeric a go, though. Also taking a mixture of Omega 3 and Omega 6

PPAR gamma is a gene, which they think goes haywire and may cause the inflammation. I believe the thinking is that the gene malfunctions due to improper processing of our lipids. Actos is an inhibitor which supposedly keeps our body metabolising carbs and fats properly.

This is why I always thought my low carb, low cal diet might have triggered something. Some people have had success with Actos and some have not.

I am wondering if there could be more than one trigger, which is why some drugs work for some people and not for others.

Anyone else see Rosa Monckton interviewed on BBC news tonight? Her hair looked just like mine. For those not in UK, she was a friend of Princess Diana and a great campaigner for disabled rights, I wonder if she has written anything on twitter about hair - I don't twitter myself.

What are your ages? I am thinking that I might be very much the oldest (I am 66), but I have had this disease probably less than two years like the rest of you.

I'm 48 and I was 43 when I started going through the menopause. It's early I know, as my sister who is 3 years older than me is still having periods and she is 51 now, I haven't had one for 5 years! I thought I had early menopause because I smoked up until I was 43, but now I think perhaps this is all connected!
Mairi I looked up the Rosa monkton interview and I agree it looks like she has our problem, I'm not on twitter either so I can't check if she has written anything, I looked on the internet with her name but I didn't find anything.