Frontal fibrosing alopecia is one of the less well-known causes of hair loss - my doctor, in fact, had never heard of it!
Yet according to reports, more and more women (and men!) are being diagnosed with this disease since it was first 'discovered' in 1994.
This article looks at what the medical profession knows so far about this type of hair loss, and how you can tell whether or not it may be affecting you.
NOTE: This information should not be seen as medical advice. You should always seek a diagnosis from a medical professional if you are affected by hair loss.
This is a type of hair loss that usually affects the frontal hairline, causing scarring that stops hair from re-growing in the future.
The name frontal fibrosing alopecia can be a bit misleading, however.
Sometimes the hair is lost from above the ears, or even from the back of the head. Around 50% of sufferers lose much of their eyebrow hair, and the eyelashes can be affected too.
It's a form of lichen planopilaris, which is the name used when the skin disease lichen planus starts affecting the hair.
Lichen planopilaris is an inflammatory condition which destroys the hair follicle and replaces it with scarring (although the scarring tends to be under the skin's surface, so you can't usually see it).
This means that the hair can't grow back in the affected areas.
It also makes diagnosis important, so that some attempt can be made to stop the inflammation, before scarring occurs.
Experts say that the condition mostly affects menopausal and post-menopausal women and that there are more cases in Caucasian women than in other ethnic groups.
But there are many exceptions to this and frontal fibrosing alopecia has also been seen in younger women, in men of all ages and in other ethnic groups worldwide.
Because the condition involves the immune system, people with autoimmune disorders - or with a family history of auto-immune disorders - may be at an increased risk.
So, too, may people suffering from lupus.
Unfortunately, some women with female pattern hair loss also suffer from frontal fibrosing alopecia.
It's important to note, however, that the condition is not contagious.
Not everyone experiences the same symptoms - indeed, some people experience none at all, besides hair loss. But other signs to look for include...
It can 'come and go', with some sufferers lulled into a false sense of security when symptoms seem to stop, only to be totally disheartened when they return in the future.
The degree of hair loss varies, too.
For some women, it can be minimal and easy to disguise with good styling techniques, finally stabilizing after a few years, with no further loss occurring.
In the worst cases, however, up to 5" of hair can be permanently lost.
Unfortunately, no one seems to know for sure - which, of course, makes treatment difficult.
There are various theories within the medical profession.
Some experts suggest it's due to hormonal changes, and whilst this may explain the reason for the condition in menopausal and post-menopausal women, it doesn't explain it for the women (and men!) who are not! Futhermore, hormonal tests in frontal fibrosing alopecia sufferers tend to show normal levels.
Experts know that the immune system is involved and that it mistakenly attacks the hair follicles, causing inflammation. But they don't know what triggers this.
The interesting things is that this seems to be a 'new' condition...
with many experts pointing to this research by S. Kossard as being the first describing the disease.
What's more, there seems to have been an increase in reported incidents of frontal fibrosing alopecia over recent years.
This has led to speculation that something within the environment is triggering the problem.
In this study, published in the British Journal of Dermatology in 2016, researchers set out to see if there was any relationship between skin care products and frontal fibrosing alopecia.
They found that the use of sunscreens was significantly greater in the group of patients with frontal fibrosing alopecia, compared to the control group, concluding that it was a possibility that sunscreen was the cause.
With the use of sunscreen on the rise in response to campaigns to prevent skin cancer, this seems a plausible theory. But it's a theory that's been debunked by other experts, leaving us with no clear answers about what might cause this hair loss, or how we can prevent it.
Separate research involving over 100 women suggested that previous intake of the drug Tamoxifen is a risk factor for the development of frontal fibrosing alopecia, and also that the the use of an intra-uterine device (IUD) might prevent its development. This research concluded
"An earlier menopause and tamoxifen intake might promote or maintain FFA, while the use of an IUD might protect from developing FFA. Our results support the previously proposed hypothesis of an underlying hormonal mechanism in the etiopathogenesis of FFA and point out low-estrogen environments as an ideal condition for FFA development."
Sometimes doctors are able to diagnose the condition by examining the scalp visually, under magnification. This may reveal inflammation of the individual hair follicles, which is a distinguishing characteristic of the disease.
For further confirmation of the diagnosis - or in cases where there is no visible inflammation - your doctor may carry out a scalp biopsy. This involves removing only a very small piece of scalp which is usually taken from an area you can easily hide.
Sometimes doctors will dismiss the inflammation of frontal fibrosing alopecia as eczema, or attribute the hair loss to alopecia areata.
If you're concerned that your symptoms may be due to frontal fibrosing alopecia then you may need to push for a diagnosis, or seek a second opinion.
Whilst there is no cure for frontal fibrosing alopecia, it may be possible to treat the inflammation to prevent scarring. The treatments may not work for everyone, but a timely diagnosis will, at least, give you a chance of tackling the inflammation before it causes permanent hair loss.
As I've mentioned already in this article, there is no cure for this condition.
Doctors may use different approaches to try to control the symptoms, but the difficulty - for both doctor and patient - is that frontal fibrosing alopecia has a tendency to 'come and go', even without treatment.
This makes it virtually impossible to tell if a treatment is effective. No one can be sure if a pause in hair loss is due to medication, or to the disease simply becoming inactive.
The following is a summary of most of the medications used in treating this condition.
Please note that these medications do NOT regrow hair in areas of loss caused by frontal fibrosing alopecia. Scarring in these areas destroys the follicles, so there is NO treatment that can make the hair grow again.
It's so important to remember this when faced with advertisements for 'miracle' products that can help. Put bluntly, in the case of frontal fibrosing alopecia, they cannot.
These are used because hair loss from frontal fibrosing alopecia tends to be caused by inflammation. They can reduce inflammation and are either taken orally (which some sources suggest is the most effective) or applied to the scalp. Sometimes they are given via an injection into the infected area.
The problems is that corticosteroids can cause side effects if used for a long period of time, especially if they are taken orally. These effects include high blood pressure, weight gain (due to increased appetite), osteoporosis and diabetes.
For this reason, they tend to be offered only in short courses.
The aim of these is to reduce the lymphocytic (white blood) cells that have mistakenly started attacking the hair follicles. This means, however, that they also reduce your resistance to - and ability to fight - infection.
These medications tend to work best for women who are suffering from both frontal fibrosing alopecia and female pattern hair loss. They work by blocking the production of 5-alpha reductase, an enzyme that converts testosterone in the body into dihydrotestosterone, which is known to cause hair loss.
Anti-androgen drugs include finasteride (brand name Propecia) and dutasteride (brand name Avodart).
These, too, can relieve symptoms of inflammation - and since they have few side effects, they can be used for longer courses of treatment than other types of medication.
Examples of those used to treat frontal fibrosing alopecia include doxycycline and tetracycline.
This is actually an anti-diabetic drug, but it has been successfully used to treat frontal fibrosing alopecia in some people.
One report describes how a small group of patients was studied, and almost 75% of them noticed decreased symptoms after taking the medication.
It does have side effects, though, including weight gain and ankle swelling.
Some people report success using minoxidil, but no one is sure whether it's because the minoxidil helps stimulate any remaining healthy hair follicles, or because it's simply treating the underlying female pattern hair loss which often accompanies frontal fibrosing alopecia.
It usually lasts until the symptoms of inflammation (itching, burning, tenderness etc) have cleared and there is no visible redness.
But these medications (with the exception of pioglitazone) don't actually treat the underlying cause of frontal fibrosing alopecia, so the hair loss may often continue.
Equally, symptoms of inflammation may return, so treatment often has to be given again.
As this article has highlighted, frontal fibrosing alopecia can be a difficult diagnosis to deal with.
The recommended treatments are not without side effects - neither are they guaranteed to work.
Below I share a few of the tips suggested to me by visitors to this website who have been affected by frontal fibrosing alopecia, but who have had no lasting success with any prescribed treatment.
Doctors are often reluctant to suggest hair transplants in cases of frontal fibrosing alopecia.
This is because there is a risk that the condition could become active again AFTER the transplant has been done. This could result in the body attacking the new hair too, and causing THAT to be lost.
Some clinics, however, may consider hair transplant surgery if the disease has been inactive for a long period of time.
Source: The Belgravia Centre
If your frontal fibrosing alopecia has got to a point where it's hard to hide, it may be time to think about a wig.
As daunting as that sounds, acceptance of the condition can prove to be something of a relief, particularly if you been through the frustration of trying medication after medication that hasn't worked.
The good news is that there are lots of options to cover your hair loss, boost your confidence and allow you to enjoy life once again.
You may not need a full wig - you may instead be able to use a 'topper' to give you a little extra hair where it's needed.
Sometimes called a hair enhancer or a wiglet, a topper attaches to your existing hair to provide more volume, or coverage.
UniWigs has a great gallery of customers' photos which shows you just how good (and natural) a wig can look! It may even inspire you to go for a whole new look.
Just remember - celebrities use wigs and hairpieces to enhance their look all the time! If you can start to see yours as simply another part of your make up, it can make wearing one seem so much more acceptable... even fun!
You may also want to read this message I received from one of my visitors, who learned to come to terms with wearing a wig after being diagnosed with female pattern hair loss. Her words are inspiring and I hope you find them helpful.
A comment I sometimes hear from visitors to this site is that their wigs look 'too much' and are simply too full of hair!
A good thing to know is that there are people specially trained to trim wigs to perfectly suit their wearers. Do an internet search for a 'wig stylist' to find someone specifically trained in wig cutting. You may be surprised at how natural a well-styled wig can look.
If you have any comments about this article, or helpful tips for coping with frontal fibrosing alopecia, please contact me using the form below. (Please note that any information you provide is completely confidential).