Self-acceptance and living with vitiligo

Senior lecturer Malini Thyagesan used to dislike having her photograph taken and would be upset when people pulled their children away from her.

But she has now come to accept her skin condition called vitiligo.

Vitiligo is an autoimmune disorder in which the body’s immune system attacks skin pigment cells, turning a person’s skin white due to the loss of pigment, or melanin.

The incurable condition is hereditary but may skip generations, can affect any age group and can flare up due to stress, trauma and injury to the skin. It is not contagious.

Those afflicted, like Ms Malini, often experience self-esteem issues at the onset of the condition. 

Ms Malini was eight years old when she first noticed that something was not right after a tree branch hit her eye. The accident left a white patch on her eyelid.

Her parents, neither of whom has any family history of the condition, dismissed it as a healing wound.

But six years later, as 20 per cent of her body became covered in white patches, her parents took her to see a dermatologist.

“I could still cover them up by wearing long sleeves or heavy make-up. But there was always one thing that was constantly ringing in my head when I looked in the mirror: Ugly, ugly, ugly,” said the 44-year-old, who teaches at Republic Polytechnic’s School of Applied Science.

Ms Malini resorted to using topical steroid cream to heal the pale patches, but more patches appeared. Frustrated, she decided at age 16 to forgo any sort of treatment altogether.

Dr Goh Boon Kee, a dermatologist at Skin Physicians in Mount Elizabeth Medical Centre, who sees about 100 vitiligo patients a month, said that the common concern among patients is their appearance.

Vitiligo has no cure, said Dr Goh, adding that there are three approaches to treating the condition – by stopping it from spreading, repigmentation or camouflage.

To stop the spread of vitiligo, he said, oral steroids and steroid creams can be used, while phototherapy – exposure to light at controlled wavelengths – may help restore skin colour.

Researchers estimate that vitiligo affects around 1 per cent of the world’s population. Notable vitiligo sufferers include American pop star Michael Jackson and Bollywood actor Amitabh Bachchan – yet, the condition is still not widely understood.

Ms Malini said people often think she had suffered serious burns, “or worse, that I have a contagious disease”, she said with a laugh. 

She soon discovered that using Jackson as a reference when explaining her condition to others helped.

The King of Pop, an African American who died in 2009 at age 50, was diagnosed with vitiligo when he was 24, and faced countless accusations of bleaching his skin to appear white. By the time he was 31, most of his skin had lost its pigment.

Ms Malini slowly grew more confident in her own skin – patches and all – thanks to support from her teachers and being treated “normally” by her friends. 

But there are still moments when she feels ostracised. She recalled occasions when curious children stared at her before they were pulled away by their parents.

“I get that kids are kids, but I wish the adults would educate their child on why I look like that, instead of turning them away,” Ms Malini said.

Talking openly about living with vitiligo – and enlightening others – have helped those afflicted with it cope better with their situation.

When Ms Malini enrolled at the National Institute of Education at age 22 to be a teacher, she was told to expect that students would inevitably stare at her and some might say something offensive.

So, on her first day as a teacher, as she introduced herself to her students, who ranged from 13 to 17 years old, she explained vitiligo to them and encouraged them to ask questions. 

Her direct approach made her students feel comfortable and eager to learn about her condition, she said.

Ms Malini, who has two daughters, aged eight and 15, said before she got married in 2008, she feared that the genetic condition may be passed down to her children. But she overcame her concern with her husband’s support.

Now, with her skin about 98 per cent white, Ms Malini calls herself the “unofficial one-man support group” for people with vitiligo – she has advised and counselled friends of friends who have the condition – and hopes to start a proper support group one day.

By Fatimah Mujibah for The Straits Times

Read the original article here.