Alopecia patients form support network

Ms Chan See Ting (seated right), reached out to fellow sufferers of alopecia areata in a Facebook post last month. Some members of the support group met yesterday for the first time, including Mr Kenneth Goh and Ms Tay Zhi Yun.
Ms Chan See Ting (seated right), reached out to fellow sufferers of alopecia areata in a Facebook post last month. Some members of the support group met yesterday for the first time, including Mr Kenneth Goh and Ms Tay Zhi Yun.ST PHOTO: DESMOND FOO

Members plan to hold monthly sessions for those suffering from autoimmune disease that attacks hair follicles

As a child, Madam Shirley was constantly teased by other children over her appearance. She was diagnosed at the age of four with alopecia areata, an autoimmune disease that attacks the hair follicles, resulting in hair loss. Adults, mistakenly thinking that the condition is contagious, would tell their children not to play with her.

"It was traumatic," said the 59-year-old, who is unemployed and gave only her first name. "Every day, it eats into your self-esteem."

While her friends and family were supportive, she had never met others who knew exactly what it was like to be in her shoes.

Yesterday, Madam Shirley finally got her chance. She met six other alopecia sufferers at a clinic in Orchard Parade Hotel, where they shared their experiences.

The support group is believed to be the first for the disease in Singapore. It started when industrial relations officer Chan See Ting went public with her condition last month. Her Facebook post for fellow sufferers of the disease to contact her went viral. There are more than 60 members in their Facebook group, including parents of children with the disease.

POSITIVE INFLUENCE

It's not the same talking to friends who don't have the condition. It may not be life-threatening, but it's not a small thing for us.

I've been quite negative and I'm still self-conscious when I meet new people. But hearing how positive the rest of them are, it makes me feel like things are not so bad.

MS LYDIA LEE, who was diagnosed with alopecia areata four years ago, on how she used to feel alone

At the group's first meeting yesterday, members shared anxieties about their appearance, treatment options and useful tips, like where to get wigs or eyebrow embroidery.

Such mutual solidarity was a breath of fresh air for legal secretary Lydia Lee, 23, who said she had previously felt "alone".

Ms Lee, who was diagnosed with alopecia areata four years ago, said: "It's not the same talking to friends who don't have the condition. It may not be life-threatening, but it's not a small thing for us.

"I've been quite negative and I'm still self-conscious when I meet new people. But hearing how positive the rest of them are, it makes me feel like things are not so bad."

A 28-year-old teacher who wanted to be known only as Jas, said: "This group is like a mini-treatment for us on the emotional level."

Financial consultant Kenneth Goh, 23, agreed: "We all know we're in the same fight. If they can be brave and positive, then so can I."

Said Madam Shirley: "Here, we don't have to say a word; we already know how each other feels."

Some took off their wigs and Ms Chan said: "It's a safe space where we can be vulnerable."

The group plans to hold a meeting every month. Ms Jolene Hwee, director and counselling psychologist with Womancare Psychological Services, has agreed to open her clinic doors for the sessions.

Ms Chan also plans to set up a website and register the group with the Registry of Societies.

As the oldest member at the meeting, Madam Shirley, who married six years ago, had some love advice for her new friends: "There's something beautiful about us. It's not always about appearance. If there's someone who can't accept you for how you are, forget them."

A version of this article appeared in the print edition of The Sunday Times on September 20, 2015, with the headline 'Alopecia patients form support network'. Print Edition | Subscribe