What is Frontal Fibrosing Alopecia?
Frontal fibrosing alopecia, also known as FFA, causes hair loss which usually appears at the front of the head. FFA causes inflammation which damages hair follicles and replaces it with permanent scarring.
What causes FFA?
The causes of frontal fibrosing alopecia can vary from autoimmune complications to hormones. This is why FFA often affects post-menopausal women and can also be present alongside genetic hair loss. FFA is not believed to be inherited but the answer is not yet fully known.
Frontal Fibrosing Alopecia Symptoms
Frontal fibrosing alopecia symptoms typically include the recession of the hairline as well as the loss of eyebrows. There may also be some redness or scales around the hair follicles, which can also lead to scarring. If you think you might have FFA, your dermatologist will be able to confirm whether or not you do by performing a quick examination. It’s possible they may need to remove samples of the affected skin on your scalp to study under a microscope, but they use a local anaesthetic to make this less uncomfortable for you.
Frontal Fibrosing Alopecia Treatment
Because of the scarring that occurs with FFA, lost hair sadly does not regrow. However, some treatments are available to help slow down the progression of hair loss. Not all treatments work for everybody, and some individuals choose to see if the condition stops by itself. There are several treatments available, so we recommend discussing these with your doctor. It might be that you would like to cover the hair loss with headwear or wigs. Please feel free to explore our broad selection.
Hair today, gone tomorrow
A story of life and frontal fibrosing alopecia.
Our lovely customer, Amanda, has been kind enough to share her experience with frontal fibrosing alopecia. Read her story now . . .
I first noticed something wasn’t right following my husband’s recovery from cancer. Although life was beginning to get back to some normality, my hairline appeared to be somewhat receding.
A visit to the doctors resulted in a variety of tests. Her ‘diagnosis’? “It might be an age thing, or it might be stress-related alopecia. So it might come back but it might not.”
Well, that was that I guess. But given what had happened during the past year I assumed it was the latter explanation (after all it couldn’t possibly be an ‘age thing’ – I was only in my early 40s!) So I accepted this and hoped my hair would grow back.
It didn’t.
For the next eight years, my hairline remained as it was – nothing grew back but nothing else receded and I was able to hide whatever this was. It just involved the fine art of backcombing and being more creative with fringes and partings.
As nothing was growing back, I started to research the alopecia condition and learned of the varying types – at that point, I thought there was only one type. On reading up on the condition, a picture appeared on the screen that stopped me in my tracks. I believed this picture could be me if my hairline continued to recede. The female in the picture had what I can only describe as a widows peak the other way round and large areas of baldness around both ears.
After the initial shock factor, I read on. At last, I had a name for what was happening – “frontal fibrosing alopecia”. I also learned it was an autoimmune disorder that can lie dormant for years then a traumatic or stress-related incident can act as a trigger to set the effects off.
My thoughts – incurable, non-reversible, permanent?
So was this it? I figured it was. How did I feel? Numb, disbelief, anger. Basically, I was gutted. My hair had always been a big part of my femininity and I had invested so much time and energy on it (not to mention money) over the years trying different colours styles and lengths. And it was now abandoning me.
Around this time, I experienced tough family losses which affected my mental health, so much so that at one point all I could hear was screaming in my head. The head which was now losing hair at an alarming rate. I guess some more triggers must have been set off.I even had my makeup applied professionally for the first time! Then came a happy family occasion – my son’s engagement party, at last, a chance to celebrate. Guests even complimented my hair on the night.
Little did they know I was sporting three different hairpieces which I had managed to style into a fairly impressive updo!
But at the end of the day (or night) the fake stuff comes off, doesn’t it? And although I was delighted the wedding was going to be the following year, my thoughts selfishly turned to ‘how much hair will I have left for the wedding photos?’ It was my dream to wear a fabulous hat at the wedding – but would that cause more embarrassment when I took it off at night to expose my scalp? Even as I write these words, I feel ashamed at the feelings of vanity. After all, it wasn’t about me. But then again it was one of the most important days of my life and I didn’t want the wedding album to show a balding mother of the groom.
So I went into panic mode, and flippantly thought to myself ‘I’ll end up having to get a wig for the event’. That flippant thought remained with me and I began my research, which of course consisted of Googling ‘wigs‘. So what was I to do? Surely I would have to go with the higher end range to get a good quality one. But what with other costs associated with the forthcoming nuptials and the fact that I didn’t have thousands of pounds worth of disposable income at my fingertips meant I was more likely to visit the bargain basement sites!
Then came a lunch date with a good friend who was recovering from cancer. Over lunch we chatted about life and I made the same flippant remark that had previously entered my thoughts, regarding the wedding wig. Her reaction? “Well, why not try one of mine?”
And a few days later she dropped it off to me – a lovely dark blonde wig. It’s difficult to put into words what I felt as soon as I looked in the mirror. For such a long time my reflection had filled me with disdain, depression and sheer bloody frustration. And now I had this blonde chick looking back at me with a full head of hair!
It was indeed an emotional moment between the two of us – me and the bathroom mirror.
Of course, my new hair-do got quite a reaction at the office. Having worked there for 15 years, and because of the low staff turnover over the years, we all knew each other fairly well. Every person did a double-take when they saw me – and compliments were in abundance. But the most amazing thing was – nobody realised it was a wig. Everyone thought I’d just went for a new style and colour. After all, I had sported many a look over the years and did a lot of experimenting with a variety of hair tools and hair dyes!
Now, I obviously knew alopecia existed before now – my younger brother actually had intermittent bouts of it, but his hair always grew back. However frontal fibrosing alopecia was new to me – and I think I must have had the audacity to assume I was that special and unique to even consider the possibility that others may have this condition too.
So that evening I returned to my good friend google. Amongst the web pages, most of which I had visited during my first research, I noticed a link to a Facebook page. On further investigation, I discovered there was actually a Facebook group for sufferers of Frontal Fibrosing Alopecia! I requested to join it there and then and after a few joining questions I was one of 691 members.
So, I guess I wasn’t that unique after all.
As well as finding a sense of belonging within these groups, I was also educated as to the best and worst places to buy wigs. And, lo and behold, most of the more expensive sites I had initially looked into for my son’s wedding appeared to be rogue sites producing horrific non-realistic wigs. Bullet dodged! I managed to glean a lot of advice on the best sites for wigs and the best caps etc. So I took the plunge and bought a couple more.
Then the big day was here. My son’s wedding day. As my only child, it was always going to be a special event and one that I had imagined for years. As I said earlier, I had visions of wearing a fabulous hat on the day. And I’m pleased to report my hat was indeed fabulous, as was the hair underneath!
Following my son’s wedding and the fact that I was starting to accept my condition, I began to grow in confidence. I even shaved off what was left of my real hair and used this as my profile picture on social media to “come out”. Don’t get me wrong, I wasn’t about to introduce myself to strangers as ‘Hi I’m Mandy, yes this is a wig’ – but wanted to be more open to folk I was likely to see on a regular basis. After all, at the rate I was changing styles, colours, lengths – I was sure people would wonder what was going on. And I was at the point where I’d rather they knew than have to wonder.
And yes, I still have paranoid moments when I feel people are staring at my hair. It always reminds me of an advert for Harmony Hairspray that those from a certain era may remember, the tagline being “Is she? Isn’t she?” But, I try to convince myself they are just admiring a lovely hairstyle. The losses in my life – whether they be people I have loved or the hair on my head – have hit me hard, but I feel I cannot continue to dwell on what I can never get back .
Hello,
Thank you for your story. Mine started after a shocking tragedy in the family. I have lost my eyebrows and eyelashes too . My hairline has receded about 4 inches, but the rest of my hair is still quite thick. I don’t think that I can manage a wig – I have tried them and i get so hot! Can you recommend a fringe wig at all, preferably without clips as I don’t want to stress my remaining hairline. Thank you in advance
Hi Amanda. Thanks for sharing your story. I relate to your journey. My FFA started in 2015 with the sides. 8 years on I am at the point where I don’t feel I can disguise it much longer. I’ve always had very fine hair so styling and back combing have never really worked. You look fabulous in your wigs, it’s encouraging to see. Tell me, are your eyebrows real? I lost mine years ago post a road traffic crash. The dermatologist said that was probably the beginnings of FFA. I don’t live in the UK now, but visit often. When I’m back next I’ll seek out your wig supplier ?. Thanks for this too on the Facebook group too!
I have suffered withFFA for the last 6 years and still find it hard to accept I wear wigs mostly all day every day I know I’m lucky as I’m now 78 it must be awful to have this when younger My consultant dermatologist tried several medications which were no good if fact after taking one drug I ended up in hospital overnight with a very bad rash
Anyway onwards and upwards and we just have to get on with it at least it’s not like a terminal illness
And It is good to know there are more like me out there
I usually wear a wide bamboo hairband, which covers the hair loss. I sometimes wear a little fringe which looks fairly natural although at times can irritate my skin. During summer I wear a straw that and during autumn and winter I try to wear a comfy beanie.
This has been mentioned by a few people. For a planned stay in hospital I’d buy a couple of soft fabric beanie hats and be upfront in telling them I normally wear wigs. In an unplanned emergency I doubt hairloss would be at the forefront of one’s mind.
It’s a lovely story and you are very courageous in being able to share. I’m still trying to come to terms with my hair loss. My hair loss is due to a side effect if the COVID vaccine. I am so angry. I used to have a nice thick head of hair. And of all places to lose it it had to be in the front. I have a high forehead and always styled my hair with bangs. If I lose my eyebrows I think it will put me over the edge. Thanks again for sharing, but unfortunately it didn’t make me feel any better. I wish it did – Kudos to you
Thank you kindly to Simply Wigs for providing this forum. Funny how our ailment has TAKEN OVER the modern zeitgeist since Will Smith lost control at the Oscars. Jada is brave to shave her head… I’m not ready for that yet. I am looking for wigs but they are more expensive than I am comfortable with right now. Dutasteride can help to regrow the hair but we need 5mgs a day, not .05 like most men. Also even 10 mg of Isotretonin every other day can stop the papules. I find that estradiol cream also helps to stop the papules and procrimus cream–aka Elidol–around the receding hairline area can help. I’m seeing a specialist at Women’s College Hospital in June but had to wait TWO YEARS for the appointment. What a disgrace considering it’s scarring alopecia and one the hair is gone, there’s no bringing it back! But I will update with my progress. I feel like the hydroxycloroquine doesn’t help that much but I have FFA and lichen planopilaris combined. I’m hoping I can get the ecimer laser treatment prescribed here in Canada but it seems that our public health plan doesn’t cover it. I will try to access it anyway, if I can… paste this link into your browser and check out these before & after photos (the laser is cool UV and painless): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8243161/
Big hugs to you all! At 50, I feel your pain. My eyebrows are gone forever but I will fight this ’til the end (no kids, unmarried so sad to be transforming this way; if I find a solution in June I will let y’all know). Really appreciative of you all posting because I decided against having more cortisol injections in my 5-years hairless eyebrow area since I’m afraid that it will collapse, thank you for the considerate and caring warning!
Hi ladies let me endeavour to express that having just read all your letters it has indeed brought me some comfort..the lovely Laura from simply wigs sent me the blog she is sooo kind and helpful..I was diagnosed with frontal fibrosig alopecia some years ago I still havnt come to accept it… I live in southern Ireland..i read here that there is a Facebook group in uk for people with ffa…I am not on Facebook but I must try to connect with it as it has been uplifting to read such positive things from people with the same condition as me…it’s my first time so thank you ladies…I wish I was living in UK imagine being able to visit simply wigs often what an amazing company they enhance so many people’s lives..warm regards everyone..mary?
Hi ladies let me endeavour to express that having just read all your letters it has indeed brought me some comfort..the lovely Laura from simply wigs sent me the blog she is sooo kind and helpful..I was diagnosed with frontal fibrosig alopecia some years ago I still havnt come to accept it… I live in southern Ireland..i read here that there is a Facebook group in uk for people with ffa…I am not on Facebook but I must try to connect with it as it has been uplifting to read such positive things from people with the same condition as me…it’s my first time so thank you ladies…I wish I was living in UK imagine being able to visit simply wigs often what an amazing company they enhance so many people’s lives..warm regards everyone..mary?
Hello I too have suffered with this condition for several years. But after a while I realised I wasn’t just going to suffer in silence so I found Simply Wigs and bought my first wig after all if its good enough for Joan Collins it’s certainly good enough for me !! She has never made any secret of the fact she wears wigs all the time and doesn’t she always look fabulous ?
So did Sophie Loren so come on girls be proud of how fabulous you are Don’t be afraid to say yes it’s a wig ! I call mine “my Joan Collins”
Hi, I have the same hair issue as you: half my hair is now non-existent and my natural eyebrows have totally disappeared too. It started 25 years ago with an itchy scalp and rash all over my head, with inflammation of the hair follicles with the front hair starting to recede and also the eyebrows, and at first my eyelashes but they grew back. I saw my GP who referred me to a Dermatologist who took a scalp biopsy for testing, and she concluded that I had Discoid Lupus causing non-scarring alopecia. I was given steroid cream which wasn’t much good and medications which either did nothing or the stronger ones caused side-effects, so I gave up with them. For several years now I have had only half my head covered in hair but none at the front or sides. At first, I tried to camouflage it by back combing and using strong hairspray. In the end I gave up and wore a scarf tied round my head which could feel hot and uncomfortable at times. I became reclusive, ashamed, and depressed. Then a friend suggested I wore a wig. So a few years ago I started looking online and finding out as much as I could about wigs. The wig website and telephone advice that impressed me the most was Simply Wigs, and I buy only from them. I now feel confident enough to see people when I’m wearing a wig, and the latter nowadays can look very natural. The psychological effects of a woman losing her hair is devastating and I fully empathise with all women suffering this. I now alternate between wearing a scarf or wear a wig, this helps enormously in boosting my confidence, and coming to terms with my alopecia and knowing that my hair loss is permanent. Thank you for sharing your story.
Best wishes to everyone here with this condition.
I started with FFA some 25+ years ago now. In fact at the time even the dermatologist I saw didn’t actually name it as such. I believe its only quite recently that it’s actually been fully recognised.
With me the receding started with loss of sideburns. I also have other autoimmune conditions which can cause hairloss so I was never expecting my hair to grow again – there was just too much stacked against it!
At first it was of course traumatic but as the years went by I found I could no longer bother being bothered. My family all know the score and have grown used to sometimes seeing me with or without wigs. In fact I didn’t start wearing wigs until about a year ago so to anyone newly diagnosed I’d say don’t panic as progression can sometimes be very slow and certainly no-one but me would have noticed anything was amiss for the first ten years.
This is lovely to read…
Very very similar to me…
But you look fabulous in your new hair, you really do..
Fantastic story and comments from everyone. I can relate to everyone of them. I keep a hat on my bedside table and have told my husband that if I am ever admitted to hospital at night he is to ensure that hat is on my head.
I developed FFA at the age of 46 and was wrongly diagnosed with eczema. I finally got the correct diagnosis at the age of 60. I am now 71 and only have hair at the back of my head my hairline starting an inch behind the back of my ears. I wear hairpieces and have started on my wig journey. My scalp is very sensitive and I have not yet found a wig that is comfortable – however I am determined to do this. Thank you for your encouraging posts- comforting to know there are such lovely people that can help along the journey.
Oops,my hearts turned into question marks! Lol!