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.

I am 47 and have been dealing with this for about 2 years now. I'm not in menopause yet but probably heading that way.

I am 55 and noticed my eyebrows and hair loss in March of this year. I got the official diagnosis in July. I don't really know when my menopause started - it seems like forever.

I am 52.. literally going through menopause at the moment. hot flashes.. missing periods etc.. cranky too.

Hi all,
I'm 57. . . started noticing the lack of eyebrows two years ago. Had a hysterectomy when I was 46. . . I had my ovaries out as well. I was wondering if that had anything to do with it, but some of us are just going through menopause so that's not part of the equation. hmmmm. . . Live in an urban area (Chicago), don't smoke, drink in moderation . . . maybe it is all the diet soda I consumed over the years!? :-) There is a history of some conditions in my family that are thought to be autoimmune . . . Vitiligo, ankylosing spondylitis, eczema. Not sure if that is related, but wonder.

Hi Ladies, I am 49. I noticed that my eyebrows were falling out (and not growing back) about 18 months ago. I had my eyebrows tattoed last year, I still have a little eyebrow hair but not much. I have not gone through the menopause yet, however I only menstruate about 3 times a year so I am heading that way. I have not heard of anybody having FFA that is in their 20s or 30s... so maybe it is linked to hormones changing as we age..

My derm knew it was FFA as soon as I told her about the eyebrows. She called it Post-Menopausal Front Fibrosing Alopecia - and doctors do believe that there is a hormonal trigger. Chris, I had a hysterectomy but my ovaries were left. That's why I was never sure when menopause started -- but I have to say that my hot flashes were really, really bad this year.
Also, every one of my siblings and my parents have or had autoimmune diseases - diabetes, Chron's, and Pemphigus. I thought I was going to be lucky. I am an ex-smoker but I don't really drink - only an occassional glass of wine.

Today I went to Dundee for an appointment at Fernbrae Hospital. The dermatologist there said that FFA is now quite common. He has had many cases - in the majority of these it has burned out within 2 years and most of his patients have not needed cosmetic enhancements such as wigs. He is against steroid injections - said that, while they may give the impression of being successful in some cases, it is likely that the treatment has coincided with the disease burnout. He has prescribed only Clobetasol for me, which most of you already have. He looked at my scalp with a small device - wish I had asked what it was - and said the evidence he saw of inflammation led him to think that my disease was beginning to burn out. He has given me a note for my GP to prescribe Clarelux shampoo(clobetasol) or Bettamousse. He said that these are not readily available in the UK, which is why he has given him a choice. I have to return to see him in two months. I do not know yet what the consultation cost - they will send a bill. You can be referred to him by your GP, but medecines will be at the NHS rate since he notifies the GP of what to prescribe (free in Scotland). His name is Dr Colin Fleming, Consultant Dermatologist and Mohs Micrographic Surgeon, BSc, Mb ChB FRCP. He was incredibly nice and gave me such confidence, which I hope is not misplaced! :-( I had printed out a lot of the comments from our forum and he very patiently read them. If any of you fancy going to see him, Dundee is on the main rail line between London and Aberdeen. The hospital is Fernbrae, 329 Perth Road, Dundee.

the device was likely a dermatoscope - essentially a high powered magnifier...
I'm in the middle of menopause. My scalp whcih was only a bit red 6 months ago and just a wee bit itchy is now really painfully sore and itchy. I've lost more hair....

I met some people at the Boston conference who lost alot of hair before the disease 'burned out' . If it is associated with menopause or hormones, I wonder if using HRT could help? I'm looking into that. They've cleared HRT now.
I don't smoke, drink wine almost daily am 5'1 and 145 pounds. My extra weight is most certainly from the wine. I work too much, live in the city, don't drink diet sodas, but used to.
I also have eczema, some small patches of psoriasis and worst of all, lichen sclerosis and atrophy--- all somewhat immune - inflammatory diseases. I should try the anti- inflammation diet.. but I can't bring myself to try another diet. I'm hoping to learn more at the conference next month.

C

Thanks for dermatoscope info. I am same height and almost same weight as you - the latter due to my love of cooking (as well as wine!). I no longer get enough exercise - I am not so keen on walking out or cycling because of the hair problem. This may change as I can wear a hat in autumn/winter. I have always tried to buy good ingredients - we are very lucky here in Aberdeenshire. I do always try all the small shops first before I resort to the supermarket. I never buy ready meals and have never used canned drinks. I did use HRT for the number of years allowed here (can't remember how long that was). This may account for the fact that my onset of FFA seems to be later than others. I have in the past had small patches of psoriasis, but they have now gone. My sisters have asthma and one has eczema.

Hi, Chris. I have been taking Plaquenil (generic) since August and sometimes I am itchy (hands) but I take a Zurtec and I get through. I am going to ask about Protopic because my doctor did say Clobestasol can cause skin thinning. I will ask about Protopic but I doubt if insurance will cover the cost. They only pay for generic drugs. Enjoy your MAC!

Mari - you have really touched my heart with your heart felt feelings about our disgusting disease. So far, the only good thing that has come from all of this is meeting (virtually) all of you.

Celia - you sound like you have so much spunk. What are antinflammatory tabs? I think there are probably many triggers for FFA -- hormonal, environmental and diet and that is why what works for one person doesn't work for the other.

CJ - I cannot wait until you have your conference. I have been reading about all the diets that people have put themselves on (paleo and anti-inflammatory) and I just can't help but think that some of it is almost a cult. How can a diet high in animal fat (paleo) be healthy? I am trying to cut out gluten and see if that helps. But I think sugar and artifical sweetners aren't good, too. Pay attention to how you feel on days when you don't have sugar or sweets. Do you feel different?

I am so happy to hear that this burns out!! Sandy -- didn't you say you thought you were at the end?

Hello all. I just wanted to add more of my info. I have been dealing with this since October of 2010, almost 2 years. It started with the itchy dry scalp, finally so bad I went to a dermatologist. He gave me cortisol shots several times and Clobetasol shampoo and liquid treatment. Then it progressed to hair loss all over and a strip in the back of my neck which did grow back. Then about a year ago noticed the hair at my temples pulling out with just a tug. It was a very stressful time as my husband had just had a mild heart attack and was in the hospital 2 days. Then it seemed like before I knew it, my entire forehead, temples and sideburns were gone. It's now about 2 - 2 1/2 inches back, maybe more in spots. I think it has mostly stopped - burn out I think. My dr diagnosed the FFA in March of this year and said there was nothing I could do about it; that the hair follicles were dead and would not grow back, but that it would eventually stop. So now my hair is much thinner -thinner on my right back side and thicker on the left. My eyebrows don't seem to have been affected so far. I do have a bare patch on one arm. I style my hair with my bangs longer & brought to the front to hide my ears. I've gotten used to wearing a hat when I'm outside and it's windy. Have not looked into wigs, but not really wanting to do that unless it gets much worse. I have been trying to eat a healthier diet, low fat, less artificial sweeteners- even gave up my favorite diet soda!- more water, fruits, veggies, whole grains. I have lost about 10 pounds and still working on more. I would try gluten free if I thought it would help. I have a little arthritis in my feet, thyroid problems, high blood pressure, not yet into menopause. I'm 47 and a stay at home mom of 2 boys, 10 & 12. I really just want to not let this rule my life and to stay active with my kids without worrying about my hair! My family -sisters - know about my hair loss but if they saw how really bad it was, they would probably be shocked. Unless it's more obvious than I realize?? I'm so glad I have found you all here to spill my guts to. It helps to know I'm not alone.

Sandy - will let you know how much it is when I get the bill from the consultant I saw. You would certainly get an appointment up here much more quickly. I only waited 4 weeks - might be worth a trip, but I don't think I know where you are.

Obviously not worth a trip, then :-(

Lots of messages tonight - just shows how well the group is working. Can't thank you enough, Celia.

Hi everyone sorry I haven't been on line for a while. I've been busy at work and although I have kept an eye on whats going on, I've just felt I've got nothing important to say!I think I'm coming to realise that its not suddenly going to all fall out. I still think people don't notice it yet unless I tell them. I think I'm a bit different to some of you as I've told loads of people about my problem! I don't know if its because I want to get my side of the story in before they notice my receeding hair. They all say they wouln't have noticed unless i said, or are they just being polite! At the moment i don't feel so depressed about it, I'm not happy about it but its not overwhelming me like it first did. I do know that having this group has really helped me,just having somewhere to sound off or find out the newest info, so thanks ladies!! I'm going to see a different dermotologist in a couple of weeks so I'll keep you updated.

Glad you are doing well, Heidi. I am like you -- I told a lot of people. But, I am selective about the people I tell. I don't want to talk about it all day because then I never get a break from it.

I actually was thinking of all of you today, because I have had an awful day. Burning, itching; and not just my head -- all over my body. Plus I have seen lots of hair flying all over the place today. The only thing that I can think of is -- I had a flu shot yesterday.

I have tried to be gluten free for almost two weeks. I don't think it has made a bit of a difference. Just makes it harder to go out to eat with my husband and friends!

I am miserable tonight. Hopefully tomorrow will be a better day.

I'm sorry you had such a bad day Pam, hopefully you'll have a better one today! I must say I don't get the burning or itching on my head, actually saying that I do get this terrible itching in my salivary glands, I wander if its part of the same thing. I have been to see specialists ear,nose and throat doctors, I've had exploritory tubes and dye passed through my salivary glands and xrays taken, but nothibg is found, they put it down to being allergic to something! So I take antihistamines most days, I suppose with our type of bodies, its all to do with our sensitive auto-ammune systems but I wander if its more relivant to having FFA.(Thats one to ask the dermotologist in a couple of weeks!) Well keep your chin up ladies, it's good to talk! X

Today is a much better day. I am not as itchy and don't have the burning feeling. I just wish I knew why today is different than yesterday. What makes one day worse than the others? Thank goodness for the good days!