The day seven-year-old Oscar Mirigliani turned up to school with a mohawk adorning his bare white scalp, classmates probably thought he was the coolest kid on the planet. He now chuckles at the memory of the creative way his parents had come to his rescue during a frightening week when his thick chestnut curls started falling out.
“I had to perform in my school’s hip-hop dance concert that night and the invitation said ‘styled hair’ but by then I only had a little bit left to spike into shape,” recalls Oscar, who is now nearly 12 and lives in Kirrawee, south of Sydney.
He has alopecia areata, an autoimmune disease that affects about 2 per cent of the Australian population, including men, women and children. Alopecia areata occurs when the body’s immune system, for reasons not fully understood, attacks the hair follicles, causing the hair to stop growing without damaging the follicles. Hair often does grow back, but not always.
Of the 23 versions, which are categorised according to the pattern of hair loss, Oscar has the rarest form. Known as alopecia universalis, it has robbed him of hair all over his body.
While past treatments have been hit and miss with risks of serious side effects, promising research that could help people such as Oscar is now reaching its third stage of trials. It is focused on identifying and blocking the genetic pathways that trigger the inflammation that causes hair loss.
“My strongest memory of the week I lost my hair was waking up one day to find my bed flooded with hair … The rest is a bit of a blur,” says Oscar.
Not so for his mother, Charmaine Mirigliani, who remembers every detail. “We were at the park for my daughter’s birthday when I first noticed a bald patch the size of a 10-cent piece on Oscar’s temple, which I thought was strange,” she says.
The next day when she collected Oscar from school, hair was coming out in clumps around his hairline. Within a week, Oscar was completely bald, but it took six weeks for a dermatologist to confirm the family GP’s diagnosis.
“He was in year two at the time and I felt I just wanted to wrap him in cotton wool and not let him out. He was like a little crab without his shell,” says Charmaine. “Thankfully, his school was very supportive and so were his friends. I think everybody was in shock because it was so sudden.”
While the condition is not contagious or harmful to general health, it can be embarrassing and distressing, and in some cases has led to suicide in newly diagnosed teens and young men.
Melbourne University’s Professor Rodney Sinclair, as head of Sinclair Dermatology in Melbourne in collaboration with Epworth hospital, is taking part in an international trial for a new drug based on gene discovery work. It has the potential to treat several inflammatory diseases, including all categories of alopecia.
More than 17 genes were found by American researchers to have roles in causing alopecia. Of those, three were involved in a particular pathway of inflammation named the JAK-STAT pathway, which has given rise to a whole class of medications.
“Our clinic completed a phase one trial which tested two different types of JAK inhibitor creams which were highly successful in switching off the alopecia in a number of patients,” says Sinclair. “We then conducted an open label [trials where both researchers and participants know which treatment is being administered]. That involved about 150 patients with a JAK inhibitor tablet that had about 70 per cent success rate.”
A number of additional industry-sponsored phase three clinical trials are now in design, and Sinclair predicts the drug could be on the market within five years. He says possible side effects are minor, but the drug will cost about $1600 a month. However, this could be significantly reduced by mixing it with other available medications.
The need for improved treatment even though the condition poses no physical threat is vital, says Sinclair.He voiced concern in 2014 in The Medical Journal of Australia about the suicide risk among teenage boys and young men diagnosed with the disease, following reports that four teenage boys in Victoria had died by suicide in 2011 following diagnosis. Three others boys were also considered to be at risk by their psychiatrists.
“We treat more than 600 people at our clinic, and those figures came as a surprise because we had always assumed newly diagnosed teen girls were most vulnerable because of concern about body image and their fascination with their hair,” Sinclair says.
“It then dawned on us the dominant hairstyle among teen girls was long hair tied back in a ponytail where up to 50 per cent hair loss can be easily concealed within the ponytail. In contrast, most of the boys had short hair and if you get just a single bald patch – even one or two centimetres – it’s immediately visible to everybody else.
“Often patients have a 12- to 18-week wait for diagnosis and treatment so sometimes they are just not prepared for the extra attention or bullying.”
Sinclair says this can trigger a cycle of school avoidance, isolation and depression, with potential for self-harm if the issue is not addressed.
The clinic now incorporates a hairdressing service for patients including boys to advise them how to conceal hair loss. Psychology services are also available that include strategies to fend off schoolyard bullies.
In 2010 Chel Campbell, of Frankston in Victoria, founded Australia Alopecia Areata Foundation (AAAF), which contributes funds to this latest research. Campbell recalls some distressing experiences after her son, Ryan, now 21, was diagnosed with alopecia 20 years go.
As a toddler Ryan had a semicircle of hair tufts at the back of his head from one ear to the other.
She decided to forgo treatment when her diagnosing dermatologist outlined options that included repeated injections of cortisone into the toddler’s scalp and blasts of ultraviolet light, both of which presented considerable risk with no guarantee of success.
Support, she says, was mainly confined to community groups run by older women whose main focus was concealing hair loss.
“When Ryan was three, one group actually suggested I smear Vegemite over his scalp to hide his baldness,” says Campbell.
She decided nothing would be achieved in an atmosphere of shame and embarrassment and went on to establish AAAF to foster awareness and acceptance.
Charmaine Mirigliani agrees that confident ownership of the condition is the key to learning to live well with alopecia, an attitude she has instilled in her son.
Oscar is an accomplished musician and public speaker who has no qualms about singing and playing his guitar for a crowd.
As he approaches a crossroads with high school looming next year, Oscar admits to a little nervousness: “I was going to get a wig but now I’m thinking it’s good to be different and not just blend in with the crowd.”
He is comforted, though, by the fact his class and circle of friends are transitioning to the same high school.
Oscar has had only one temporary regrowth of hair, which involved eyelashes and eyebrows that protect eyes from sun, dust and perspiration.
“You learn things about your hair when you have this condition,” he says. “We’ve found out interesting stuff, like the fact hair regulates your body temperature, which is why I get colder than other people in winter and hotter in summer.”
Oscar says bullying has never really been an issue for him, although “a lot of people in public ask if I have cancer, but they usually do it in a nice way”.
He credits supportive friends and family for having helped him find comfort in his own skin.
“Last Christmas my mum, dad and brother shaved off their hair just to look like me,” he says. “That was pretty awesome.”
This article was first published in the print edition of The Saturday Paper on Jun 16, 2018 as "Hair pressure gauge ". Subscribe here.