Frontal Fibrosing Alopecia Elizabeth Carr-Ellis

Frontal Fibrosing Alopecia: How losing my hair makes me feel ugly every day

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Frontal Fibrosing Alopecia – not a name that slips off your tongue. And certainly not as easily as it makes your hair slip off your head.

My hair loss and receding hairline was one of the first menopause symptoms I went to see my GP about (you won’t be surprised that I was basically sent away with a flea in my ear and told I had male pattern hair loss). And while I was concerned that I was looking more and more like Elizabeth I with each photo I saw, I thought a good diet and some good-ole HRT to restore the oestrogen levels would put that right.

Oh silly, naïve girl.

Frontal Fibrosing Alopecia Elizabeth I Elizabeth Carr-Ellis

It was in 2020 – around six years after that trip to the GP – that I learnt from the lovely Lisa Caddy at Philip Kingsley Trichologists that I wasn’t suffering male (or even female) pattern hair loss. Instead, it was Frontal Fibrosing Alopecia – and it was irreversible.

Now even that wasn’t enough to truly scare me. Yes, I had bad days, where I felt conscious of how my hair was receding, but on the whole I’d come to terms with it.

Until last weekend, when I looked in the mirror and realised half my eyebrow had also gone.

Yup, turns out Frontal Fibrosing Alopecia can also hit the hairs in your brows, too, leaving me looking like Vanilla Ice on overdrive.

I had never heard about Frontal Fibrosing Alopecia – and my GP certainly hadn’t – so I want to share my story to help others understand and, hopefully, take action earlier.

What is Frontal Fibrosing Alopecia?

Frontal Fibrosing Alopecia (or FFA, as it can be called) is a form of scarring alopecia that causes hair loss around the hairline at the front of your head.

It is thought to be an auto-immune condition, where your immune system becomes confused and starts attacking your body. In this case, it attacks the hair follicles (the bit inside your body from which sprouts out the root and hair), which become inflamed and are then destroyed. Forever. Once the follicle is scarred, it can’t grow hair again.

It mostly hits post-menopausal women, but it can hit earlier.

What causes Frontal Fibrosing Alopecia?

Now you can probably guess by the group of people affected what I’m about to say next… No one knows because not enough research has been done (I should have that on cut and paste when it comes to women’s health).

It was first described in 1994 and since then has gone from being called a “recently described disease” to “a growing epidemic”. Numbers are rising and no one is sure why.

As I said, it’s thought it could be an auto-immune disease because it has similarities with another scarring hair-loss auto-immune disease called lichen planopilaris. But there are lots of differences, too, so scientists aren’t sure.

Because it is mostly seen around menopausal women, it’s believed it is something to do with hormones and the change in hormone balance. However, it can also affect men and children, so perhaps not.

It goes on – it can be found in families, but isn’t believed to be genetic (no one else in my family suffers) and it could be environmental, although cases are growing around the world.

What are the symptoms?

Frontal Fibrosing Alopecia is a little bugger because the symptoms are so mild you don’t notice them. They include:

  • itchy or painful scalp
  • and a rash along the hairline, face or scalp

For me, I noticed a redness around the roots of my hairline and my scalp gets itchy (which part of my body doesn’t in menopause?) Then I get a white scale around the root that would stick to the hair. It’s practically impossible to remove – and the number of hairdressers who’ve asked me if I’ve been painting! I now know when this appears that it means the FFA is active and doing its worse.

It then progresses:

  • loss of eyebrows (my days of tweezing are long gone);
  • receding hairline;
  • advanced hairloss,
  • and loss of hair in other parts of the body, such as arms and legs. Men can get a patchy beard, too.

How does Frontal Fibrosing Alopecia affect your hairline?

FFA causes your front hairline to recede – all of it. So that’s the top and the sides, too.

For me, I now have about an inch of shiny, smooth skin at the top of my hairline, while the sides are wispy and very, very thin. And then, of course, I now have the vanishing eyebrows.

It may not sound much, but it has affected my confidence so much. It’s not a straight recession, so I have a small gap where no hair grows, which leaves me with a gap in the front of my hair if I don’t style it meticulously.

When the wind blows and I catch sight of myself in a mirror or shop window, I look like Skeletor. And I don’t even have it that bad (fingers crossed).

Can FFA be cured?

No. Once the hair follicle is dead and scar tissue has grown, it will never grow again. Which means hair transplants (yes, I have looked into them) are useless.

It doesn’t all happen at once and the recession can take many years, with periods of remission.

God, I’m getting depressed… Happily, it may stop by itself, leaving the average loss about 1in-2.5ins.

Can FFA be treated?

Kinda. Under Lisa, I was able to get a steroid cream from my GP to try and treat the area, but you can’t use it for too long as it thins out your skin. You can also get tablets such as corticosteroids or injections, but nothing has been proven to truly help Frontal Fibrosing Alopecia and many of them have side effects.

So I’m looking after my scalp health as much as I can. I’ve written many times about my love for Philip Kingsley hair products, so the Flaky/Itchy products – shampoo* and conditioner* – are a must. The Scalp Toner is also a godsend in our house (even Mr 50S uses it if he gets an itchy scalp from too many products) and I adore the Elasticizer for a weekly hairmask. It seems to make my hair thicker and fuller.

Finally, I was lucky enough to have a consultation with Lisa at the Philip Kingsley Trichologists clinic in London** and she prescribed a specific scalp cream that is anti-inflammatory and anti-scaling that I can use a couple of times a week when it looks bad, too.

As well as this, I’m also not tying the front of my hair back as much any more. The Croydon Facelift is a thing of the past.

And of course, after the most recent discovery, I’m looking into getting my eyebrows tattoed…

Final words

When I first started noticing problems with my hair, I asked my GP (a different one) to refer me to a dermatologist because of the scaling around my roots.

“No need,” she said. “We know something about skin, too.”

Well, that’s the thing, isn’t it. Our GPs know something about everything, but sometimes – as with menopause – we need specialised help.

If she had referred me, I may have got the help and treatment I needed earlier and my hair loss may not have been as bad. Instead, I got a blood test that showed my iron levels were good and sent away with a flea in my ear.

I think of her every time I look in the mirror and feel ugly.

Has your hair been hit by menopause? I’d love to know what helps or doesn’t. Leave me a message below…

Need advice or help on your menopause? I’m here to help. Give me a shout and let’s arrange a chat.

**Ad disclaimer: I was given a free treatment at Philip Kingsley Trichologists in October 2020 as a thank-you for my work with Pausitivity after interviewing Lisa (which you can see here). There was/is no expectation of an article in return. For more information on affiliate links, read here

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13 thoughts on “Frontal Fibrosing Alopecia: How losing my hair makes me feel ugly every day”

  1. I think you have named the hair loss problem I am experiencing. A GP who specialised in women’s health told me it was “male pattern balding” and linked it to hormones and the menopause. It was only a small patch, but now I have hair loss across my hairline. I also get the itchy scalp but only usually at night when I go to bed. I don’t have a rash.
    It is very distressing.
    I am going to ask for a referral to a Dermatologist. Is there anything else I can do?

    1. Hi Beverley. The most important part is looking after your scalp – I truly swear by the Philip Kingsley products when I feel an itch coming on. Also, try not to tie your hair back if possible, and certainly not too tight, and avoid any skincare getting onto your hairline. There’s no proven link but there’s no proven link about anything to do with FFA and skincare could be one of the environmental factors. Stand firm with your request to see a dermatologist. I wish I had. Let me know how you get on x

  2. I have been recently diagnosed and as you say the the effect it has had on my anxiety and self confidence is awful. My doctor was actually sympathetic but didn’t seem to know anything about FFA ( I had googled after getting a rash in my hairline) . I decided to go private (which I can ill afford) to see a dermatologist as my anxiety could not take the long wait on the NHS. I chose Dr Christos Tziotzios as he is specialising in FFA . He is so kind and is conducting research into FFA. He thinks it is auto immune / genetic. I have no one in the family with it but they have other auto immune issues.

  3. Hi, I have just returned from a hospital appointment with a dermitoligist, originally to review a mole on my forehead ( no issues there thankfully!) but have had it confirmed that I too have FFA. I have hair loss from ear to ear and only realised something was amiss when I realised the mole in question used to be hidden in my hairline. I am not going to lie – I am devasted about the diagnosis of FFA and have seen some frightening pictures on google (why did i look!!), however, I also feel guilty for feeling so upset as there are people suffering far worse conditions. I have always been really fortunate to have a good head of hair (it is about the only thing I have always really liked about my appearance!!). I intially noticed my loss of eyebrows going back several years but put this down to over plucking / hormones so thought nothing more of it.
    The consultant has prescribed steriod lotion to be applied to my hair line daily intitially and an anti-biotic tablet and then a review in 4 months. He too confirmed that there is not a lot know about FFA and the cause / treatment. I am hoping that the Steriod lotion will stop the progression of the hair loss…..fingers crossed.

    1. I used steroids for a little while and they did seem to stop it so let me know how you get on. And don’t google this!!!!! Those images are horrendous and scare me too. Please don’t feel guilty – your life and emotions have as much validity as others. FFA has really hit me hard. It’s not some light thing to be brushed away. Good luck with the treatment x

  4. Hi, I am brand new to 50Sense and found it by pure accident after looking for something on bleeding whilst on Evorel Conti. It’s actually given me peace of mind seeing so many ladies in the same position as myself!
    I think I may be posting this blurb in the wrong section….sorry.
    I’ve only been on EC for 6 months, and the practice nurse I see, who specialises in HRT, is getting a bit anxious about bleeds (only 3 very small shows) and getting ready to send me to Gynaecologists etc, and you know what all that entails, biopsies, ultra sounds and every other indignity they can bestow upon you. Not that there is anything wrong with any of these things for people who definitely need it.
    I just know in my heart, that after having no periods for three years, that this is simply a side effect of using Evorel Conti, so it’s made me feel much better as I have an aversion to all things gynaecological…..necessarily evil, I know.
    I am now 57, and everything went pear shaped at age 50, maybe a year or three prior, and suddenly I just didn’t know my body anymore. I didn’t feel like myself either. Eventually, I couldn’t suffer it any more and had to go to the GP last December. I had a phone consultation with my GP who gave me Sertraline and referred me to the specialised practice nurse. The nurse was great, we talked (in person) through all my symptoms and she left me on the Sertraline for now, but also put me on EC. I feel much better now all round and I think it’ll be the EC to be fair. I am going to tell her about 50Sense so she may have a read herself although she may only be allowed to recommend NHS reading literature on menopause.
    I have been so lucky, my husband has been an absolute star battling through it beside me with the mood swings (which he inevitably got the rough end of) always too hot, forgetting practically everything, aches and pains etc and generally feeling ‘off’. At one point, I was actually worried I had the beginnings of early onset dementia as I would just forget how to achieve a simple process on my laptop for work or I’d forget an appointment or a birthday. I always had a great memory and now didn’t trust myself to remember something accurately.

    My hair is thinning too. It’s not FFA like you ladies have described, but their is a definite thinning.

    Anyway, I just wanted to say hello (even in the wrong place!) and for the ladies losing hair completely in areas, I really feel for you.
    If there happens to be reincarnation, I AM NOT COMING BACK AS A FEMALE 😂😂😂

    1. You can post anywhere you wish with such a lovely post, Katrina! I’ve decided that if there is reincarnation, I want to come back as my sister’s cat as he has the best life ever!

      1. Yes, a much loved cat or dog body would do me just grand. Spoiled rotten, sleep when you want, fed when you want etc etc. As long as the body is male, I’d be quite happy, after all, what’s the worst they can do to me, neuter? Even better getting rid of those annoying dangly bits…..😂

  5. Hi, I have this condition also much to my dismay. Dermatologist (Australia) prescribed Minoxidil oral capsules 0.5 mg, Doxycycline 50 mg, Spiralling 25 mg for some months ahead. My hairdresser has given me a new hairstyle, short all over with hair on top and sides styled forward. I also use a hairband to keep fringe blowing backwards. A wig is on standby for bad days.

  6. Just been trying to search on the internet for hairstyles to hide my FFA. I was diagnosed a year ago after my Rheumatologist referred me to a Dermatologist for hair loss including arms, legs, face, hairline and eyebrows (none)! I had my eyebrows tattooed which was a game changer and a massive confidence boost. My hairline has receded approx 2 inches and I had all those symptoms, itchiness, redness, small white flakes and painful scalp around hairline.
    I have underlying Sjögrens Syndrome (auto immune disease), so perhaps the two are linked. I’m 65 and consider myself quite fit and health for my age, although these conditions are a huge inconvenience they won’t get the better of me and am learning to live life to the full with both.
    Still looking for a good hairstyle though!

  7. Fiona Macpherson

    I’m a FFA sufferer too.
    Wasn’t too concerned in the beginning (I reckon it started about 6 years ago, pre- menopause).
    It’s now receeded about 35 mm at the worst bit in middle of forehead.
    I have relatively thick hair and a great hairdresser so no-one can tell as yet.
    Just saw a dermatologist yesterday (probably way too late ☹️) who has prescribed synalar gel & tacrolimus ointment both to be applied twice weekly on alternative days. I’m not holding out much hope but live in hope! Dermatologist confirmed it is active and said it can burn itself out but no guarantee and at what stage! I’m now getting very down about it and seriously don’t know how it is going to affect me (have so far laughed about it, but really worrying now)
    I appreciate there are worse things and terminal illnesses but worry where this will take my mental health.
    Love to all

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