HI all,
I want to weigh in on the ' at least its not cancer' conversation. I agree, its important to put things in perspective.. Indeed, its not cancer and we are not dying of this disease. However... and this is the common lament of skin patients of all types..is it does affect our lives and our perceptions of who we are and in some cases our ability to function as we would like. How we FEEL is actually important and by diminishing our feelings we diminish our right to them and that also makes us feel diminished - bad, guilty and shameful for even feeling this way. Shame is an insideous emotion - very damaging. I think it is important that we validate our feelings about this and don't negate them. Yes - its true that its not cancer, but we have a disease that will or already disfigures us.. that will make us the target of staring.. tough stuff in this appearance-conscious world. if we diminish it - 'its just a hair disease'- or 'its just a skin disease', then we de facto invite everyone else to diminish it and our feelings. We make ourselves less.
It is what it is. We are, to a large extent powerless and more so, because the condition is so rare. Line up all the negatives - pain ,itch, hair loss, being the subject of staring, medications that have debilitating and sometimes dangerous side effects, unknown comorbidities, misunderstanding, rare disease....let's validate our feelings and not be ashamed of them, and not let others suggest we should be ashamed of them.
A friend, when I told him of my diagnosis, said - "phew - I thought you were going to tell me something bad - like you had cancer." I told him that this was affecting me ...and he begrudgingly allowed me my right to these feelings. His point was - he doesn't care if I have hair or not. And that is another truth. Those who know us and love us will continue to do so. Those who are blinded by how weird we may look.. they lose out on getting to know us. Their loss.

I totally agree with what you are saying - it is almost like you went in my head and took my thoughts out. I also thought about it a lot and my fears are not about what the people I love and know are thinking. My fears are more about people who don't know me; the stares, the looks, etc. Now my husband tells me "who cares?", but I know I do. So, I will get some hair so that I don't have insecure feelings and get on with life. Now, where do I find hair?

Hello all, it is so good to hear that others have the same fears, unfortunately though. I think coming to terms with hair loss is like facing death as in denial, anger, grieving, and finally acceptance. I have also faced the same thoughts with my son who has autism. I still have many times of saying "why me" when it comes to my son's condition, but I know he has his whole life ahead of him and surprises me every day. In the same way, I have times when I wonder why I have been burdened with this hair loss and other conditions - possible arthritis, thyroid problems, high blood pressure, and realize that while I can control some of it, I can't control it all. I still try to do my best to look good, and style my hair as best I can, put on a little make-up and go out, but I'm still very self-concious, looking to see if people are looking at me and wondering what's wrong with me. In our world, we are judged by our looks, and if we don't look "right" then we are dismissed. I never wanted to be the center of attention anyway, but especially not now. Anyway, I think all we can do is to try to have a positive attitude and look for help if we can find it. My doctor who diagnosed me didn't give me much hope, and I'm not currently under any treatment for FFA. I don't know if there is anything that would help. And since my insurance won't cover it, I probably can't afford it. I haven't looked into wigs yet and I'm afraid of spending money on treatments that don't work.

In the CARF literature, they did say that it is possible to treat the inflammation and still have the hair loss. That is why they were looking into Actos to stop what is causing the hair loss (the PPARg gene going hay-wire). I am so excited because my wonderful dermatologist was able to reach a hair expert at UCLA. She said the gold standard was Plaquenil, which I am going to start as soon as I get my eye test done. I am also taking an acne strength antibiotic (doxy) and use Clobestasol (hair foam) as needed. Now the choice is whether or not to take Acots, too. Sandy, why does he think you only have a year of hair loss left? Karen, don't give up - meds aren't for everyone, but there could be a cosmetic solution that you could live with that will make you feel good. Tomorrow I am going to a wig expert who works with Alopecia patients. (I almost said victims instead of patient). I will report what I find out. Thank you so much for the support you have given me.

Haven't you all been busy! my computer has been playing up over the past few days so I've just got back on and there has been loads of interesting chat!!It's so nice talking to people who know exactly how your feeling. I went to a couple of wig shops the other day, but they weren't great, but I did quite like the idea of having a fringe and side bits. They only had synthetic hair but I know you can get real hair ones. I think as it gets worse I think I will use a hair band but I'm not dismissing the wig bits yet. I might use a fringe or bangs as you call them with a hair band to cover the join!

Christine sorry I'm so long in getting back to you. I will be writing to Dr Harries at the weekend. I don't know how sucessful I'll be, but I can only try!

You did make me giggle Pam! When I went to try some wigs on, I just felt exactly the same as you I've got a wig on my head!! i did think the fringe with side bits could work though, using a head band to cover the join. I think we must all be about the same stage of hair loss as I'm still not ready to take the plunge. i do wear hats and hair bands when its windy but most people don't know anything is wrong!

Pam to answer your question, the only changes to my skin is the lack of hair! I haven't needed to remove any hair from my legs since xmas, so there are some benifits! I still need to do under my arms though! My head and my hands seem to be hypersensitive, If I knock or catch them it is very painfull, but other than that I don't get an overly itchy scalp or pain any where, thats the ridiculous thing I am probably the fittest I've ever been since a teenager, I'm at the least stressfull time of my life and now my hair is falling ou,how does that work!
Hope the hair styling goes well next Thursday.
Sandy my doctor said to me that it will burn itself out but he didn't give me any exact time scale just a few years. I'm sending a letter to a doctor who is reseaching FFA so hopefully he might come back with something more positive,I'll keep you all posted!

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