Hello, I sent a message to group above, but don't know if you got it. Anyway I was diagnosed with FFA this spring and am still getting used the idea of it. It happened gradually at first, just scalp problems, patches of hair along the back of my hair -neck, that eventually grew back, then thinning mostly on one side and then the loss of my temples, around my ears and forehead. I've been able to hide it for the most part, but still hate that I know it won't get better, and may get worse. I hate wind! I try to bring a hat when I know I will be outside. I'm 47 with 2 boys, ages 10 and 12 and I want to be active with them. Would like to know how others deal with it. Thanks!

Hi, It has affected my self esteem also. I'd always had thick curly hair - too much hair sometimes. Over the past 2 years it has become thinner all over, more on the right side and all along the front hairline. I still have eyebrows and lashes thankfully. And the texture of my hair is different- more thin and frizzy, just not the same. I've gone to more of a flat hairstyle with bangs in the front and I use a curling iron or flat iron to smooth it out. The front hairline has about 1- 1/2 inches missing and I worry that it will recede more and be harder to cover. I just feel ugly and feel like I have to hide it with the hair I have left or wear a hat. I worry about being outside without a hat, going swimming, the wind blowing it all over. My husband says not to worry about it, because he loves me no matter what. and I know it's not a life threatening disease, but still it just makes me feel bad. I just don't like being stared at. Although I'm used to stares sometimes - I have a 12 yr old son who has autism and sometimes he behaves like a younger child and is too loud or sometimes will have a meltdown in public. And when my doctor told me the news he was just like "you have ffa, sorry, goodbye" Didn't offer much in the way of treatment or anything else. I held it together in his office but was crying all the way home. The people I've told are like "it's just hair" and "at least it's not anything worse", but Really how would they feel if it was THEM?? if they woke up bald tomorrow how would they feel about it? thanks for letting me vent!!! It feels good to talk to someone who understands!!

Celia - don't worry about the typos. That would be hard to type with one hand, hope it heals up fast for you! I'm sure any type of alopecia would be hard to deal with, especially for the younger kids or teenagers. I've had days when I didn't want to leave the house or volunteer for something at my son's school because I don't want the other moms to look at my hair, but then I realize I need to get on with life and can't stay at home forever. I am a stay at home mom, and try to help out at my boys' schools, Cub scouts, Boy scouts and in the summer my son who has autism plays Buddy Baseball and I am on the committee for that. I just don't want someone to think I'm losing my hair because of cancer or some other serious illness. My hair seems to be staying the way it is for now, so I'm just trying to style it so it's less noticable. I just pray it doesn't get much worse any time soon. I see lots of older women with thinning hair, and I am an older mom, but I don't want to be mistaken for my kids Grandma! I am also trying to lose weight with Weight Watchers, eat more healthy and take vitamins in the hope that it will slow down my hair loss, and make me feel better. Hope you're having a good day! Karen

I have recently been diagnosed with frontal fibrosing alopicia and interested in finding as much info as I can about this disease

Hi, it's nice to finally meet others who have experienced the same thing (unfortunately) but we can all help and support each other. My hair problems started out with an extremely itchy scalp and flaking. I though it was dermatitis or psoriasis on my scalp - it was really bad so it went to my dermatologist and got a rx scalp treatment and shampoo- Clobetasol. The dryness isn't so bad now but I use Neutrogena t-gel shampoo to keep it under control.
We had a nice holiday - 4th of July, yesterday, had a cook-out at my husband's dad and step-mom's house, with her two daughters and my kids' cousins. Then stopped to see a fireworks show in our town. We were mostly inside during the day since it's been very hot here - hitting 100*F here in the midwest. The heat and humidity don't do my hair any favors! Our kids had fun lighting some fireworks in our driveway too. I also wanted to let you know that I'm on Facebook under Karen Beck (Karen Snyder Beck) - in Council Bluffs, IA - if any of you want to "friend" me. Otherwise I'll see you here. Hope you're all doing well.

I'm not very computer literate,andI'm not sure if I'm writing in the right place to reply to you all,hopefully you get this!!! I realised there was a problem in January as my hair was receding like a man's would.I went to the doctor and he did loads of blood tests, they all came back ok, except my hormone ones, which I already new as I have been going through the menopause since I was 43 and I am now 48! Over the next few months I was having some other issues with allergies and I was waiting to see a consultant so I thought all this, and the thinning of my eye brows would be connected, and the consultant was going to give me a magic pill and I would be right as rain!!! When I went he said he didn't know what was wrong and I should go and see a dermatologist. To cut along story short, I went private, and I have been given hydroxychloroquine 200mg and dermovate scalp application which I use morning and night.I have tried reflexology, a high alkaline diet, silica and hair and nail vitamines. Do I sound desperate!!!!! Iam so confused I don't know what to do for the best.Should I go down the medical route which uses medication that could damage my liver,kidneys, my eye sight,and even could make me loose my hair!but has had results which slows the process down but doesn't cure it or should I go down the complementary medicine way who haven't heard of frontal fibrosing alopicia so they could be working on an area that will make my body work better so will it make my hair fall out quicker!!! I am so confused I don't know which way to turn, any ideas anyone?

Hello all!
I was diagnosed with scarring alopeia 2 years ago. It started out with me realizing (by looking at a wedding picture) that my eyebrows had disappeared. Also, my head was itchy and at night got cold. I went through a battery of tests disproving thyroid, finding gluten sensitivity (which I now avoid) and finally a derm specialist who happened to have done her fellowship in scarring alopecia.
She biopsied my scalp and found moderate to severe inflammation. I was on some anti-malaria med for a while (anti-inflamatory) but it did nothing. I was on ACTOS for a year and and cortizone shots. My eyebrows came back and my inflamation abated. I didn't like being on it due to potential side affects, and stopped last year. Unfortunately the inflamation has returned (mild) and I have started loosing my eyebrows again.
I'm thinking of getting eyebrow tattoos.
That's it in a nutshell. My hair is thinning on the front, but it's not so bad unless the wind blows. (My hair is pretty baby fine anyway). I went blond to soften the color difference between my scalp and hair. Everyone assumes it's to hide grey.
I've been pretty open about my condition with friends and co-workers...warning them that I'll probably become the crazy hat/scarf lady eventually! :)

Hey y'all!
When I was going to my dermatologist who did her fellowship on scarring alopecia, she said that (at least her) research implicated the oil produced by the hair follicles. She said that for some reason, the oil is not normal (something about messed up "lipid pathways"). The inflammation is the result of our bodies rejecting/fighting the "foreign" oil. In this sense, our alopecia isn't technically "auto-immune"...but it's all related. Anyway, ACTOS, the diabetic drug, does something to the lipid pathways and it seemed to help my case. BUT, that drug also is implicated in a lot of bad side effects, so I stopped taking it after a year. She is waiting for the active ingredient in ACTOS to be produced by pharma in a topical form. Problem is, that doesn't seem to be happening anytime soon. In the meantime, it seems all we can do is treat the inflammation and try to break that cycle. Bottom line, the medical establishment doesn't really know much. Scarring Alopecia is supposed to be RARE....yet my doctor said she is seeing A LOT of it in that past few years. hmmmmmm

Hello Pam I'm using anti malarial drugs and steroid lotion twice a day. I would like to say it has relly slowed the hair loss down but if I'm honest I don't think it is. Sorry that isn't what you want to hear. My doctor did say it works better on some people than others so I hope you are one of them! I have also tried a change in diet, vitamins ,silica, reflexology, and I'm using Philip Kingsley itchy/flakey hair products.I am also desperate for imformation on something that i can feel positive about, that might actually work. I would love to find a professor or someone who is doing research into frontal fibrosing alopicia that we could all give our own infomation so they can collect data and perhaps get some results.

I don't wear anything yet, accept for hats on windy days! I've been on medication since the end of May. what is Actos?

Sorry i went to bed it was after midnight, I had spent nearly two hours trying to put a photo to my name, I told you all I'm computer iliterate!! I realised after I sent the message that Actos is the medication that Carol Sue was on, I think she felt it helped but came off it due to the side effects!

Hello, I haven't been on here for a while but thought I'd add my story. I was diagnosed with FFA this spring 2012 by my dermatologist. My hair and scalp problems began in the summer & fall of 2010. My scalp had been very itchy and irritated and I went to my regular doctor and she prescribed Derma-smoothe oil treatment, which you put on your scalp and leave on overnight. This was very difficult to use and didn't do very much good. I was using Neutrogena T-gel shampoo daily and it helped, but by later in the day my scalp was itchy again and driving me crazy. Went to my Dermatologist in 12/2010 and he gave me Clobex shampoo and clobetasol topical solution. These worked better but not completely. I also got shots of Cortisone along my front hairline. Around this time I noticed I had some hair loss at the back of my neck- a strip about an inch wide right along the back. I had bloodwork done which showed a positive ANA -anti-nuclear antibodies - which suggest an imbalance in my auto-immune system. I went to a Rheumatologist and they found nothing else wrong so they did nothing. I continued with the cortisone shots every 6 weeks - this was supposed to be for the inflamation. finally I quit going because my insurance would not cover it and was getting expensive. I was losing hair all around at this time but didn't really notice how bad until September of 2011 when the hair at my temples and front started falling out faster. I was just using the T-gel shampoo and the itchiness was not as bad now, just hair loss. In Feb & March 2012 I went back to the Dermatologist and showed him how bad it was now and he did a biopsy and blood work and finally diagnosed me with FFA. He said there were some Rx meds that might help but he didn't recommend them because of the side effects. So now my hair loss is about 2- 21/2 inches around the whole front hairline and ears, and seems to be staying that way. It's also thinned all around with a very thin patch on the back right side. I can cover it mostly with my remaining hair but am very self-conscious about it and wear a hat when I'm outside and it's windy. Sorry this is so long! I still use the t-gel shampoo daily and that helps with the scalp itch. I'm also taking more vitamins and trying to eat healthy in the hopes it will help. - Karen - also I am 47 yrs old.

Oh I forgot to say that the hair at my neck line in the back, did eventually grow back in, but the hair in the front has not. Thus - FFA. also a lot of my major hair loss times appear to be at very stressful times of my life. And now my ANA is still elevated and I've been having trouble with pain & swelling in my hands and feet - my doctor thinks this is Rheumatoid Arthritis. I'm sure it's all related somehow. Anyone else have RA??

With regards to your question of what meds I'm on I apply dermovate lotion twice a day and I take 1x Quinoric (hydroxychloroquine Sulphate)each morning and my reflexology lady suggested I take silica 4 times a day. I also try and do a high alkaline low acid diet ie. lots of veg and fruit. But unfortunately i don't think any of it is working. The reflexologist suggested I go and see a douser healer, but i don't think I will, I feel no matter what I do the hair will stop falling out when it wants too!

Pam, yes I've read about Lupus and they are some of the same symptoms so I have an appointment with a Rheumatologist to find out more. I also have thyroid problems and take synthroid for that. I had part of my thyroid removed about 7 yrs ago. Also have high blood pressure and am trying to lose weight through Weight Watchers. Lost 10 pounds so far but have more to go. With my feet hurting and swelling it's been hard to get much exercise. As if this is not enough, my 12 yr old son has moderate Autism and that takes up much of my time caring for him and my other son - 10 yrs old. I just can't afford to be falling apart quite yet!!! I'm hoping the Rheumatologist can help me figure out what's going on with me. I'm glad to know this group is here for support.

I know how you feel! I keep trying to put it into perspective, I have a lovely family and friends who will love me with or without hair, and i'm thankful its me and not my daughter, I couldn't bear her having to deal with it, with her whole life ahead! Talking of acid, over the past few years I've had a problem when I eat acid thing such as grapes blueberries or too much sugary things, like chocolate!I get an itching along my salivary glands from the bottom of my ear along my jaw line. It is an uncontrolable itch which i find hard not to scratch and it gets so bad it swells up so I look like a hamster!! This can all happen when I'm asleep and i wake up with the swelling. I've had dye put into my salivary glands and xrays taken but there are no blokages and the ENT consultant couldn't tell me what it is. So i've put it down to another allergy!

HI all,
I'm also an FFA'er. I was diagnosed this spring. Ironically I run a national organization for people with skin diseases and I didn't twig onto the fact that I had this disease until it had progressed to 2 cm loss, no sideburns and almost no eyebrows. Go figure. Denial is a powerful force. I have a few other skin conditions, all connected with auto - immune stuff, but I'll confess this diagnosis has hit me hard. I've registered to go to the CARF conference in Boston in a few weeks, just so I can learn more. reading all the posts here and in other groups, the whole thing seems pretty hopeless sometimes.
I find it interesting that this may be not as rare as previously thought. It may be a question of raising awareness in our communities- getting people to see their doctors - to register in. Once drug companies see that there is a larger 'market' for their products and doctors see that their work could affect more than a handful of people maybe research into FFA would take off...
just some wishful thinking...

I'm on the anti-malarials, and a trio of topicals but the plaquenil makes me sick to my stomach - persistent diarhea.. On the plus side I'm losing weight, but I do spend far too much time in the loo. I expect that I can't continue on this, and will discuss with my derm next week.

anyhow .. is anyone else coming to this conference in Boston?

Cheers, Christine

Hi Christine I would love to come to Boston but I'm in England! but it will be great having an 'insider' going who can collect as much information and keep us infomed!!! would't it be great to have some really poitive news! I don't know if within your job role of running the skin disease organisation, if you know of any data base that we could put all our individual information on so there might be a pattern or something that could give us a clue to why this is happening or what can be done!!Back to your medication I haven't heard of plaquenil is it a type of steroid lotion? I'm now on dermovate which is milder than Betnovate that I was on.

Sorry Christine I'm now on Betnovate which is a milder form of dermovate!!

Pam _ I'm about to get off plaquenil, because the stomach side effects are not sustainable... I'm not sure about the next systemic-- also bad side effects. On scalp itching.. I have no idea - the clobetasol lotion helps me. the itching is indeed crazy making as I feel that if I scratch or rub, I'm losing another hair. I've been told that isn't the case, but you can't help feeling like it is anyway.
Heidi - THAT is a brilliant idea. The Canadian Skin Patient Alliance ( www.canadianskin.ca)doesn't do anything like that currently, but perhaps its something CARF could take on, and if not CARF, then I'm thinking we might interest a number of Cicatricial Alopecia researchers to take this on in collaboration with a few of us.... how hard could it be?. Perhaps a research grant could fund the setting up of a self-reporting data base - online... it could be a model for all kinds of rare skin diseases, where treatment paradigms vary. We could launch it on facebook and create a website for it... By we, I mean a core group of FFA patients... or CARF.
With your permission, I'll float the idea when I'm at the conference. I'm connected with two of the Cicatricial Alopecia specialists in Canada. I expect each of us knows one of the experts in their country.IF we all think this is worthwhile we might each try and talk with our local expert and ask what we might include in such a registry that would be helpful.

ALL THAT SAID, I expect that optimal treatment for FFA is going to vary from person to person. From my work in the area of skin diseases, I've learned that there is no one 'best' medication for everyone with a given disease. Presumably the treatments that are currently being used for FFA have worked for some people. I think that the more we can find what is working for MOST people most of the time.. maybe it leads to greater understanding and better more targeted treatments.
I could go on and on.. what do the rest of you think?
Christine

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!