Raising awareness of alopecia - the causes and what it is like to live with

September marks the start of international alopecia awareness month.

Picture: Pixabay

In the UK alopecia areata is a relatively common condition.

NICE (the National Institute for Health and Care Excellence) estimates that 15 in 10,000 people in the UK has the autoimmune disease.

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Mandy Thomson lost her hair over the course of 20 years, enduring bouts of hair loss followed by temporary growth.

Mandy before

She said: “It was just storms of good hair moments and bad hair moments, for so long I was adjusting my hairstyle to disguise my hair loss.

“For a lady losing you hair is one of the worst things that can happen to you, as you don’t feel decent going out if you hair is not right and to then lose it, is just horrid.”

Mandy’s episodes of hair loss followed instances of extreme stress in her life - the breakdown of relationships, relocating from the north west to Sussex, work commitments, the increase of family size due to a new relationship and the passing of her father.

She was initially diagnosed with alopecia areata by a consultant aged 31.

Mandy now

Mandy first noticed the signs of alopecia while drying her hair and seeing clumps falling out. She also noticed that she had to remove hair frequently from her clothing and comb.

“It was very distressing and something I thought about all the time,” she said.

“I just had to live with it and every morning wake up to see how much hair had fallen out. It got to the stage when I just told my eldest daughter to shave it all off as I want to take control of it and from that point onwards, I wore a scarf.

“I did keep getting shoots of hair return but this was extremely fine and pure white, so once again after the passing of my dad in 2018 I shaved my head and it has not grown back since and would be described as alopecia universalis.”

There are number of different types of alopecia:

Alopecia Areata is an autoimmune condition, which often starts with isolated patches of hair loss, commonly in one or more coin-sized (usually round or oval) patches on the scalp and/or across the body including the beard, eyebrows, eyelashes or body hair, including pubic hair.

Androgenetic Alopecia is often referred to as ‘Male Pattern Hair Loss’ or ‘Female Pattern Hair Loss’. It is the most common type of hair loss, affecting approximately 50 per cent of men over the age of 50 and around 50 per cent of women over the age of 65. Androgenetic Alopecia can also affect younger men and women.

Central Centrifugal Cicatricial Alopecia (CCCA) is a form of scarring alopecia, which starts in the center of the scalp. CCCA is most common in women of African descent, but it can also affect men and women of any ethnicity.

Chemotherapy-induced alopecia, when people under going cancer treatment lose their hair.

Trichotillomania is a condition that leads to an overwhelming urge to pull out hair, this includes eyelashes and from the head.

Traction Alopecia is hair loss caused by strain on the hair follicles, often from tight hairstyles. The continuous strain on the hair follicles pulls out strands of hair and can damage or destroy the follicles.

In a person with Telogen Effluvium more hairs move into the resting phase, so instead of shedding 10 per cent of your hair every day, about 30 per cent of the hairs are shed. If you have Telogen Effluvium, you may lose an average of 300 hairs a day instead of 100.

Believed to be an auto-immune disorder, the body’s immune system attacks hair follicles, resulting in hair loss.

Causes are unknown, although it is believed stress could be a catalyst, and available treatments offer no guarantees of success.

After shaving her head for the final time, which Mandy describes as “liberating”, she then sought to find a wig to wear instead of the head scarf style she had previously been accustomed to.

Mandy, who lives in Bexhill, said: “I just wanted to blend in and not stand out as I always felt I stood out with my head scarf. I tried synthetic wigs but they were too uncomfortable and not natural looking.

“Following more in-depth research I discovered Karen Green of Fantastic Hair. She understood exactly what I wanted and her consultation ensured the wig I chose was right for me and once I started wearing it, I felt normal again.

“So much so, that when I returned to work (as an anti-social behaviour officer in social housing) I emailed all my colleagues to explain that they may or may not be aware I had alopecia and had made the decision to speak about the elephant in the room and replace my head scarf with a wig.

“The response I received was lovely with so many nice comments and when I did wear my Freedom Wig from Fantastic Hair to work these comments were followed by compliments and people’s disbelief that my new wig was not my real hair.”

With the support of her family and friends - especially her mother, two daughters and three grandchildren - alongside her Freedom wig from Fantastic Hair, Mandy has been able to come to terms with her condition as well as rebuild the confidence which had been knocked during her reoccurring hair loss.

She said: “To lose your hair is just awful, you question everything, you never feel good about yourself and when you walk in a room you feel conscious that your hair may move to reveal a bald patch.

“When I was initially diagnosed with alopecia the consultant offered no hope or advice to how I could stop it or anyone I could talk to. However, the help I have received from friends and family over the years has been brilliant and the security and natural look and feel of Freedom wigs has given me the normality I have wanted.

“My main advice to anyone who is living with alopecia is to remember you are still you, and you remain a beautiful person no matter how you feel at the time. It’s hard to comprehend this but it is true and your loved ones will view you the same as they always have done.

For more information visit www.fantastichair.co.uk or follow @FantasticHairCo on Facebook or Instagram.

This month also marks the 15th birthday for charity Alopecia UK.

To celebrate the occasion it has launched a #AUK15for15 birthday bonanza. It hopes to raise £15,000 and a number of people have taken on challenges so they can reach their target.

Alopecia UK is a charity with aims around support, awareness and research. If you are looking for alopecia support and information, please visit www.alopecia.org.ukA message from the Editor, Gary Shipton:

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