Kylie Bamberger, a Los Angeles-based woman with severe hair loss
, discussed her eye-opening story in an episode of the Facebook video series '60 Second Docs' entitled 'I Have Alopecia'.
In the inspiring clip, she describes both her childhood and adult experiences with Alopecia Areata
and how she continues to raise awareness of the autoimmune disorder.
The video has been a big hit, with over one million views and 10,000 reactions. The comments section is full of people sharing their own personal battles with hair loss, no doubt encouraged by Bamberger's brave account.
She started to lose her scalp hair at the age of 12, and three years later the rest of it fell out - this suggests that her Alopecia Areata progressed to the more extreme form of Alopecia Universalis
, which causes hairloss from head to toe. Continues below...
She describes the issues she faces on a daily basis due to her lack of hair: "People mistake me to be a man. I'm commonly thought of as being sick. I get a lot of sympathy from all the wrong places".
However, she has channelled these experiences into the empowerment of others. She entered the public spotlight in 2017 after participating in Health magazine and Sports Illustrated Swimsuit's joint #WhatIModel social media campaign. Her video, which discussed inner beauty and self-acceptance, was one of the most popular entries.
She also tries to be a role model for children with autoimmune alopecia
:"When I was a kid, I didn't have anyone that I could talk to or relate to. There was no one that I could look up to that said, 'yes' they've been through the same thing. Now I'm able to provide that to kids who are struggling with the same disease. That is the most gratifying experience of my life".
Other public figures who experience forms of Alopecia Areata include the retired British Olympic cyclist Joanna Rowsell Shand
and Gotham actor Anthony Carrigan, who made his own alopecia acceptance video.
Dealing with Alopecia Areata
Alopecia Areata is characterised by sudden, patchy hair loss of the scalp, whilst its two more severe phenotypes, Alopecia Totalis and the aforementioned Alopecia Universalis, present as total baldness of the head and a rejection of all body hair respectively.
The precise cause is unknown, but alopecia has several suspected 'triggers', which include psychological and long-term chronic stress, sudden extreme shock and physical trauma. The hair may regrow naturally - within a year in fifty per cent of scalp-only cases - but when or if this will happen is impossible to predict.
While no cures for any forms of the autoimmune disorder currently exist, Alopecia Areata treatment
is available to medically-suitable people aged 16 and over with the scalp-only form. At Belgravia
, this typically involves using appropriate formulations of high-strength minoxidil
, which are generally paired with complementary non-pharmaceutical hair growth boosters.
Alopecia Totalis and Universalis currently have no truly effective treatment options regardless of age, but researchers are continuing to explore
the efficacy of JAK inhibitor drugs - such as tofacitinib
- in relation to treating all forms of Alopecia Areata.
In the meantime, there are numerous hair loss charities
, support groups and communities dedicated to offering support and advice to those dealing with Alopecia Totalis and Universalis.
Despite some deciding to fully embrace baldness, Bamberger being a notable example, wigs can also be a source of great comfort for those who enjoy the sense of control a head of hair can offer. In cases where children are affected, charities such as Little Princess Trust and Hero by LPT in the UK, and Locks of Love in the US and Canada, can provide real-hair wigs free of charge.
Whatever the choice, the main thing is that those with the disorder feel comfortable in their own skin - as Bamberger reiterates, "femininity is not defined by the way that we look, it's defined by the way that we feel".