Three brave women share their stories of suffering with the loss of their hair. Photo / Thinkstock
Three brave women share their stories of suffering with the loss of their hair. Photo / Thinkstock
Some bad hair days never end, writes Sharon Stephenson, but alopecia sufferers have learned to turn their loss into a strength
What's your party trick? It's probably not as good as Sasha Mitchell's, who likes to whip off her wig to reveal a bald head.
"It freaks people out," says the 28-year-old Aucklander, who jokes her bad hair day has lasted more than a decade.
Mitchell was in her first year of university when a hairdresser pointed out a small bald patch on the back of her head. She thought nothing of it. Within a month, Mitchell's pillow was thick with moulted hair, her shower clogged. Not long after, the rest of Mitchell's body hair - including her eyebrows and eyelashes - also deserted her.
"I had a horrible time of it," she says. "As a child I'd had long, lustrous hair that everyone told me was beautiful. And then a few years later, I looked in the mirror to see the scalp of an old man staring back at me."
The advertising copywriter was diagnosed with alopecia universalis, the most severe form of hair loss where all hair on the body is lost. It can happen at any age and is generally believed to be an auto-immune disease where, for reasons no one's quite sure of, the immune system identifies hair as the "enemy" and attacks the follicles.
In Mitchell's case, the medical experts were bewildered.
"I've spent years seeing trichologists [hair loss experts], dietitians, dermatologists and acupuncturists. I tried everything from horrible creams and shampoos that burned my scalp and stained my pillow to steroid injections. I drank weird potions of herbs and God knows what. To be honest, I would have run naked backwards up One Tree Hill if I thought it would help."
Possible causes ranged from exam-induced stress, allergic reactions and the breakup of a long-term relationship to iron deficiency and the contraceptive pill.
"One week I'd be told I had too much thyroid, the next, not enough. Or it would be low estrogen or high androgen. No one could ever agree on the cause or, more importantly, how to make it grow back."
To make matters worse, Mitchell was made to feel guilty about her concern for her condition.
"One doctor pretty much called me vain and stupid for caring so much about my hair. He said I wasn't dying of starvation or living in a war zone, that I should find something more important to worry about."
Another told her she should count herself lucky she hadn't lost her hair because of chemotherapy.
Three years after her initial hair loss, Mitchell's hair did grow back - but six months later it was gone again.
Relief came with a swipe of the plastic: initially a "horrible synthetic wig" that her flatmate once accidentally pulled off in the middle of Smith & Caughey's ("it was years before I could face going back there") but Mitchell eventually found an overseas supplier of wigs that, she says, look just like the real thing.
Mitchell struggles to find the right words to describe how alopecia has affected her life.
"For most women, our hair is our identity. It made me feel feminine and confident.
Without my hair, I [felt like I] had nothing. I wasn't just losing my hair, I was losing myself."
The disease also shaped the person she became. "I wouldn't go swimming, on a boat, a roller-coaster or out in windy weather." Wherever possible, she wore hats and loud scarves and chunky jewellery - "because it gave people something to fixate on instead of my hairline."
Mitchell admits she's lucky she met her future husband at 14. They married two years ago, she in a hairpiece that, to this day, no one suspects wasn't her real hair.
"My husband has known me with and without hair, and he doesn't care. He understands how hard it has been, the loss of confidence, the not wanting to go out. I don't think I could have made it without him."
It's difficult to underestimate just how important hair is to us. A study by Yale University psychology professor Marianne LaFrance shows people make up their minds about each other in three seconds - primarily through their hair.
"The usual assumption is that the twinkle of the eye, the length of the nose or the cleft in the chin affects first impressions. But, in fact, hairstyles totally swamped those impacts," says LaFrance.
And while men have pretty much made peace with thinning hair, balding and receding hairlines - or at least can get away with it - women's hair loss is still a big taboo. It's hard to put a figure on what is, quite literally, a hidden problem, concealed by wigs, weaves and embarrassment, but statistics suggest that fewer than 45 per cent of women will go through life with a full head of hair.
Here in New Zealand, more women are showing up at hair-loss clinics around the country, and they're getting younger.
Last year, trichologist Rory Plumridge told the Herald on Sunday that for the first time, Kiwi women patients were outnumbering men in seeking help for hair loss.
"Forty years ago, 10 to 15 per cent of clients would be women. Today that figure is around 51 per cent."
Several factors were cited as the reason, including increasingly stressful lifestyles, diet, some types of contraceptive pills and a parallel increase in auto-immune and ovarian disease.
Yet it's not just our manes going down the plughole: a survey by Hairline International found 78 per cent of women who experienced hair loss no long felt like women, 40 per cent said their marriages had suffered and 63 per cent had considered killing themselves.
Janine Antram has never had suicidal thoughts, but losing her long blond locks three years ago has certainly taken her to some dark places.
Janine Antram's search for the ideal hairpiece led her to import wigs from the United States and begin her own business. Photo / Christine Cornege
"I spent about two months crying uncontrollably, trying to figure out why this was happening and what I'd done to deserve it," says the Cambridge mother of two.
To be fair, Antram had probably invested more in her appearance than most: a part-time model, she spent her days working as a personal trainer and came third in the 2000 World Bodyshaping competition.
Antram's story starts 10 years after that, when her hairdresser found a bald patch. It was the first time she'd heard the word alopecia.
"I had to go home and Google it, but within two weeks I'd lost clumps of hair from all over my head."
Antram's GP referred her to a specialist in Tauranga who diagnosed her with the partial hair loss condition, alopecia areata.
"She was fabulous and prepared me for the worst. They took tests and thought it might be related to [autoimmune disease] lupus, but couldn't be sure."
Antram is 41, fun and spirited. If you passed her in the street, you'd think she was 20 years younger.
"You wouldn't have thought that three years ago," she laughs. "Back then, I was convinced alopecia had ruined my life. I travelled for miles and spent thousands seeing four specialists in five months, because I needed answers. But no one had any: some thought it might be hormones or stress from my daughter leaving for uni. One even suggested it was because I dyed my hair too often. I was extremely depressed, totally withdrew and became a recluse, chained to my computer looking for wigs that looked like my hair used to."
Antram's search for a suitable hair-piece was met with unsympathetic salespeople and ill-fitting wigs that came with large price tags.
"I spent $750 on one wig, a short auburn bob, which was probably the best I was offered.
When I got home, my daughter said: 'It's okay but it doesn't look like you'. I never wore it again."
She found a United States supplier whose wigs were also expensive. He suggested it would be cheaper to buy five so Antram did, putting the other four on Trade Me where they sold within 24 hours.
Since then Antram has helped more than 500 Kiwi women - from alopecia sufferers to those who've lost their hair after chemotherapy - to find a wig "that makes them look like them".
"I stock about 200 wigs at any one time and if women can't come to my salon, they send me a photo and I match them a wig. I haven't got one wrong yet."
Last year Antram's business, SS Hairwear, was named Waipa's best emerging business.
"Losing my hair gave me a fabulous business that I'm good at, that I love working in every single day and where I get the opportunity to change women's lives - who could ask for more?"
But the biggest change has been to Antram's personality. "Alopecia definitely made me a better person. I let go of the vanity and my confidence dropped, but in hindsight it probably needed to. I used to be quite vain and was never happy with my hair, no matter how much I spent on it or how many compliments I received. Losing it has been like lifting a burden I didn't realise I had."
Two things happened to Joanna Parsons the year she turned 8: she decided to become a doctor and she was diagnosed with alopecia.
Joanna Parsons shares her battle with alopecia. Photo / Martin Hunter
One morning, as her mother plaited her thick, brown hair, she noticed a clump was missing.
Repeated visits to doctors and dermatologists yielded little in the way of explanation.
"I was 8 years old, so it wasn't as though anything stressful had happened to me," says the English-born obstetrician/gynaecologist. "There wasn't much the doctors could do because treatments were just being developed. I was one of the first to use Minoxidil, which the pharmacy made by crushing tablets and mixing it into a paste that my mother spread over the patches. I also tried some really unpleasant creams that burned my scalp and stained my pillows."
Parsons did, however, draw the line at having steroids injected into her scalp.
Puberty is hard enough without having clumps of your hair fall out and Parsons says she spent hours "getting creative" to cover the bald spots. Not long after, her eyebrows and eyelashes disappeared. By the time Parsons got to university, she was adept at explaining to flatmates why there was so much hair in the shower.
"For most of my teens and 20s, I felt unattractive and unfeminine, which probably wasn't helped by being skinny and flat-chested. I don't think I suffered by being later to dating than my friends, but it was stressful because I wasn't doing what everyone else was. I guess I was too scared of boys laughing at me."
Now based in Christchurch, 37-year-old Parsons admits a full head of hair has become somewhat of an abstract concept.
"It's fallen out and grown back three times. The last time I lost it was two years ago, just after I had my daughter Mary. Even though I'm classified as having alopecia areata and not totalis or universalis, I tend to have no eyelashes and minimal eyebrows, about five hairs on my legs and not much underarm hair."
Like Antram, her life is littered with bad wig experiences. "I got my first hair piece when I was 20 and my mother saw an article about a salon who offered a service a bit like extensions, where they filled in the missing bits with synthetic hair. I had to go back every six weeks to have it redone, which was pretty expensive, but thankfully my parents paid.
After a few years, I realised that if I was going to work in hospitals I needed to stop being so self-conscious, so I went to a wig shop in London."
Her first wig was, she admits, "bloody awful". Thankfully, wig technology has improved and since meeting Antram 18 months ago, Parsons has become more confident about her choices.
"I'd resisted shaving my head because it felt like I was accepting my condition. But when I met Janine, she convinced me to shave my head, which means the wig doesn't move around too much and my head doesn't get too hot. My husband Rob shaved it for me and I haven't looked back."
Becoming a mother has also made Parsons less self-conscious, particularly as she doesn't want her daughter to pick up any neuroses. "It makes me laugh when Mary puts on my wig and looks like a mini-me. I'm waiting for the day she announces to a room full of strangers that her mummy takes off her hair to have a bath. The only difference now is that I won't want the ground to swallow me up because I'm so embarrassed. This is who I am and I'm fine with it."
WHAT IS ALOPECIA? There are around 50 different hair loss disorders.
Some of the most common are:
• Telogen effluvium: general shedding from all over the head. We typically lose around 100 hairs a day but sometimes shedding accelerates due to stress, illness, medication or hormones. Hair generally grows back within six months.
• Androgenetic alopecia: in women, hair generally thins on the top, frontal area, just behind the hairline, but stays thick at the back. An enzyme causes conversion of the male sex hormone testosterone to another hormone (DHT), which causes the hair follicles to produce thinner hair.
• Alopecia areata: an auto-immune disease that causes round patches of hair loss and can lead to total baldness. In many cases, the hair grows back. Alopecia totalis: the total loss of scalp hair. Alopecia universalis: the most severe of these auto-immune conditions results in the total loss of all body hair.
