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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.
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…
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.