A schoolgirl, eight, born with a full head of hair has revealed how alopecia has left her completely bald – after she began losing her hair in clumps at the age of five.
Niamh Lewis, from Glyncorrwg, South Wales, has no hair, eyebrows, or eyelashes after an over-active immune system triggered alopecia.
The confident youngster says she’s endured bullying at school because of the condition and many people assume she has a terminal illness – but says she won’t let taunts get her down.
Niamh Lewis, eight, from Glyncorrwg, South Wales, was born with a full head of hair but began losing it in clumps aged just five
The Welsh schoolgirl pictured as a toddler with a full head of blonde hair
An over-active immune system triggered alopecia in Niamh but her mum Amy, 43, says she’s learned to cope with negative comments, and has even signed for a modelling agency
Niamh’s mum Amy, 43, says it hasn’t always been easy for her daughter but that she defies negativity: ‘Niamh’s look is striking and I am proud how she has dealt with comments from other children and strangers who stop her in the street.
‘Niamh is confident in her own skin and is an inspiration to us all.’
Alopecia is caused by an over active immune system attacking the hair follicles and experts are unsure if Niamh’s hair will ever grow back – despite being born with a full head of hair and having long hair as a toddler.
Niamh was three when she lost her hair in small patches, but when she turned five she lost her hair rapidly.
Amy explains: ‘It gradually progressed and by the time she was five it took only four months to go from having hair to no hair at all.’
The condition can be genetic and the single mum-of-one, who works as an events manager said: ‘It started as three patches, Niamh didn’t notice and it grew back.
Single mum Amy says they initially tried to cover Niamh’s hair loss with a wig but that it looked to big for her ‘tiny features’
‘We tried different styles to cover the patches, but the hair was becoming very fine and tangly.
Her mother says that when Niamh turned five in December that year, her alopecia had became more noticeable and by the summer holidays it was all gone.
‘Now we only speak positively about hair loss. The terms ‘suffering with’ or a ‘survivor of’ are not words we use…
Amy is very proud of how mature Niamh has been. She said: ‘Niamh said to me, if my body needs hair it will grow it.
‘Mum, let’s just go with the flow, so now we only speak positively about hair loss. The terms ‘suffering with’ or a ‘survivor of’ are not words we use.’
However Amy openly admits she struggled more than Niamh. She said: ‘As her mother, I grieved for her hair and found the loss hard to deal with. I worried about her future, especially as a female with no hair.
‘I always worry how she will be treated by others who don’t understand.’
Alopecia typically manifests at first with one or more small bald patches, about the size of a 50p piece, on the scalp and can sometimes progress to complete hair loss
‘Wherever we go people stare’ Mum Amy says the family has had to get used to unwanted glares from strangers
Niamh pictured as a baby with strawberry blonde hair – her mother says they’ve decided against steroid injections that could help because ‘it was a lot to put Niamh through’
When Niamh first started to lose her hair, she was donated a wig from The Little Princess Trust.
She said: ‘I did so much reading and so much research. I tried a wig when she was five, but she doesn’t want it anymore. It was too much for her tiny little features and it was would get hot and itchy.
‘She loves to swim and hang upside down outside like a typical child and the wig got in the way so she said no.
‘We tried head scarfs and sometimes she wears accessories for fun, but normally she prefers to not wear anything.
Headscarves were also tried by Niamh but the eight-year-old says she prefers to wear nothing on her head
‘We focus on all the positives. Face paint can go everywhere and she is the first to get ready for swimming, and of course we never had to brush out painful tangles.’
Sadly the family have to deal with adults staring on a daily basis who assume she is ill.
Amy who now home educates Niamh said: ‘Kids would call her baldy and some of the girls wouldn’t play with her.
Amy added: ‘Wherever we go people stare. They assume she has cancer or a terminal illness
‘Now she is older she can explain to people she isn’t poorly and I try and reassure people she is okay and her hair loss is not cancer related, but I’ve had strangers hug me and cry and give her money or sweets.’
Amy and Niamh decided against medical intervention to stop the hair loss.
Amy said: ‘There are steroid injections available, but I felt it was a lot to put Niamh through.
A natural confidence has seen Niamh signing up with various child modelling agencies
The confident youngster also has her own Instagram page so she can share how she deals with the condition
The family have been able to connect with people who also have alopecia from across the globe on social media
‘You can also buy steroid based creams but decided against that as it may irate her eczema.
‘It’s about weighing up what’s best for each person.’
Determined to embrace her beauty, Niamh has recently joined a number of modelling agencies.
Amy said: ‘Niamh really enjoyed modelling and never lost her confidence in front of the camera. I’d like alopecia to be seen in mainstream modelling.’
Niamh also has an Instagram page to connect with others with the condition.
Amy said: ‘Niamh started to question what she might look like as she gets older so we follow women and children all over the world with Alopecia and it’s great to have that support.
Niamh and Amy are also involved with Alopecia UK and Amy hopes to set up the first support group in Wales.
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