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alopecia universalis
Shannen Earlem started developing bald patches as a kid. And she recalled how they appeared and grew back intermittently until March 2018. She then shed all her body hair and was diagnosed with alopecia universalis (AU), a condition in which the immune system mistakenly attacks the hair follicles.
Now happy to go wig free, she hopes to pass her courage down to her son, Tommy, who has been diagnosed with alopecia areata (AA) – which follows a similar pattern, but full regrowth is more common.
“When I first lost all my hair it was very hard, but it's harder when your child is going through it," Earlem said. “Tommy started taking steroids five weeks ago for his hair loss."
"He's losing it at the top of his head. We are not sure if medication will make much difference, but he doesn't really understand what's happening at the minute. It doesn't really bother him. He just knows that we've been putting cream on his head."
“At first, I worried how it would affect him when he's older, but, really, he'll be used to it if it doesn't grow back and, growing up around the condition, he will be more resilient," she added.
“I do wonder if my daughter, Phoebe, who is four now, will go through it too, but up until now she's been okay. If she does, it's something that she's been around for a few years, so I can imagine she will be just as resilient as Tommy."
Earlem was desperately self-conscious about her own hair loss as a child.
“I think I noticed it more than other people at school did, because I knew it was there," she said.
“As a teenager, I remember having three balding patches on the back of my head, which I would hide by tying my hair up in a ponytail and wearing headbands. It took about six months for that hair to fully grow back."
Keen to raise awareness of alopecia, Earlem said it was not until two years ago in March 2018 that the condition really took hold.
Her hair suddenly started coming out in clumps when she brushed and washed it. But this time it did not grow back, leading to a diagnosis of AU.
️“I was shocked at how much I was losing when I was pulling it out of the brush," she said.
A few months later, she lost her eyebrows, eyelashes and all her body hair. And by September 2018, she had just a few strands of dark brown hair on her head. So, she decided to shave them.
“He had all his shaving stuff already, so we did it when the kids had gone to bed one night," she said.
“Because my hair fell out slowly, I got used to looking different. But getting used to a new appearance is always difficult," she said.
“I find it harder wearing a wig, because they are so warm and itchy. I wear wraps rather than wigs – my favorite is a turban-style black wrap."
She is still learning to not let other's opinions bother her.
"I get on with it and try to ignore anyone who stares, but it does take its toll on me. I do ask why this had to happen to me. But I just have to suck it up," she said.
One of the most difficult aspects of going bald for Shannen has been people's assumption that she must be battling cancer and going through chemotherapy treatment.
“I had a guy come to my house about a lock on the back door that needed fixing and as he was leaving, he asked if I was 'well now' and I replied saying I did not have cancer. He was so shocked," she said. “It's an assumption people make. I just told him it was hair loss."
While her children acknowledge her bald head, it is not something they comment on.
“The kids never compare me to other moms," she said.
“At school they had to do portraits of their mums and the teacher printed out a photo of a bald woman for Phoebe – so she had obviously happily told them that her mom had no hair."
“I'm happy to pop to the shops with nothing on my head, and I always open the front door to our house with it showing," she said.
“But I usually put something on my head out of habit, when I'm getting ready to leave the house for the day, just as part of the routine of getting dressed."
Earlem will never forget the first time she went outside without covering her bald head, during a vacation to Tenerife in December 2018.
“I wanted to get used to it while I was away," she said. “I did not wear anything on the way to the airport, as I thought I might as well do it properly, right from the start."
“One worry was that because I did not have any hair, would they question my passport photo? I thought they might stop me at the border, but they didn't."
While Earlem has considered taking steroid treatments, she sees little point as she has heard that the hair falls out again once you stop taking them.
“I had a few wigs, but I wasn't bothered about wearing them," she said. “Having bald patches is actually harder than being completely bald."
“People stare at your patches when you are walking down the street, so I tried to cover them more than I try to cover my bald head," she explained.
Having her eyebrows tattooed did make her feel more confident, though.
“I get on with everyday life and I'm coming to terms with how I now look," she said. “But what gave me more confidence was getting my eyebrows tattooed."
“I used to wake up in the morning and not like the way I looked with no hair and no eyebrows, when I saw my reflection in the mirror, but getting my eyebrows done makes me feel so much better," she said.
“It has given me more confidence to go out with nothing on my head. Your eyebrows are the main feature of your face – you realize how much of a feature they are when you have no hair. For me, it completes my face. There are also lots of men who have alopecia, but it's more acceptable for a woman to get her eyebrows tattooed."
“But I've seen some men who have their eyebrows micro-bladed – a semi-permanent tattoo procedure – and they look amazing," she said.
Inevitably, people have commented on Earlen's lack of hair – especially in her last nursery job. Some kids would ask why she was wearing a hat inside if it was cold.
“Also, when I was a nanny to a six-year-old boy, he noticed that my eyebrows were different after I got them tattooed," she said. “But people don't say anything bad."
Now Earlen is happy to embrace her baldness and even make a feature of it.
“I wear something on my head now because it's so cold, but in the summer, I'm not bothered about going bare," she said.
“I might get the odd look, but I am used to it and don't bat an eyelid anymore."
“Now I'm planning to get a crown drawn around my head in henna when the weather gets warmer," she said.
“And I really want to encourage other people with alopecia to do something positive like this, too."
According to hair specialist Tracey Walker, director of education at The Institute of Trichologists, alopecia can be present in several members of a family.
“Alopecia areata – including totalis, universalis and ophiasic – is termed an auto-immune disorder," she explained.
“There is a train of thought that we inherit a gene that makes us susceptible to auto-immune disorders, but that it takes a second co-factor for the gene to be triggered. Families may have a trait of these genes but it doesn't necessarily mean that everyone in the family will develop hair loss."
“When a patient attends a trichology clinic presenting with alopecia areata, one of the questions we would ask is, 'Are there any auto-immune disorders in the family?' I wouldn't however, say it's common to pass the gene for hair loss down the family," Walker added.
To anyone suffering from alopecia, Earlem recommends Alopecia UK on Facebook as a support group.
For information visit www.alopecia.org.uk/