Vitiligo strips woman of skin pigment

After years of dealing with scorn and discrimination due to vitiligo, Shantol Morgan-Forrester decided to shift the narrative by embracing the uniqueness of her skin and becoming an advocate for persons living with the condition.

Morgan-Forrester grew up dark-skinned, but at age 13, she discovered two spots on her lips that would not go away. Her mother took her to a dermatologist, where she was diagnosed with vitiligo, an autoimmune disorder that causes patches of skin to lose pigment or colour.

"At the time, the dermatologist advised me that it might spread or it might not spread, and I could regain my pigment, and the spots on my lips just looked burnt. So sometimes persons would say, 'burn-up lip' or something like that, but I wasn't really bullied in school," she said. However, at age 23, Morgan-Forrester's vitiligo started to spread rapidly, leading to painful experiences.

"I was told [by the doctor that] with vitiligo, whenever you're in a stressful environment or you're being stressed, it increases the spread. So I was in the work world at that time, under a lot of stress with my workload and everything, plus I was going to university," she told THE WEEKEND STAR. While pursuing a Bachelor of Science degree in management and accounting at The University of the West Indies (UWI) Open Campus, the changes in her appearance severely affected her self-esteem and confidence.

"Before that I was very outspoken; I was a little chatty-chatty and very opinionated. But when it started to spread I started stuttering, I wasn't able to explain myself when I'm doing presentations, and even in meetings I found myself struggling to speak," she said.

Due to her condition, she experienced discrimination in the corporate world, being overlooked for promotions despite being a high performer. She was accused of bleaching and eventually became withdrawn.

"I can remember clearly taking public transportation and it was on my hands, because with vitiligo it tends to spread to areas that are very visible, and people really didn't know much about vitiligo, and I was being scorned. People didn't want to touch me or be near me, almost like they thought I was contagious," she said.

These experiences motivated Morgan-Forrester to drop out of university and spend the money she saved for school to get experimental treatment in Cuba, which cost almost $1 million. However, after three days of treatment in Cuba, and six months of at-home treatment with a thick, placenta-based cream, the pandemic hit and the uncertainty of her employment added new stress.

"In May, it started spreading more while I'm still doing treatment. I finished the treatment in June and it was still spreading, so at this point I just felt defeated," Morgan-Forrester said, adding that she even decided that she did not want any children.

"If people can literally scorn me for something that is not contagious, I said to myself I don't want my child to experience this, because in most cases it is hereditary," she said. She also considered not marrying her then boyfriend, now husband. But Morgan-Forrester did get married and has a daughter, who has completely changed her attitude towards her condition.

"Having her made me realise I couldn't change who I am. I already had vitiligo and all I could do is embrace it. So rather than her growing up and seeing me being ashamed, she could see me confident and proud," she said, adding that her husband's motivation also aided in her changed attitude.

"He said to me, 'Try to be like other persons who are struggling with it, but speaking up about it, suh if she born and she has it', advocate for persons with it and research more about it'," Morgan-Forrester said.

Now at 30, Morgan-Forrester has lost 85 per cent of her pigment, but is a proud advocate for people with vitiligo who spends her time on social media educating people about the condition. She also does educational presentations about vitiligo without a stutter at the UWI Mona campus, where she is pursuing a degree in general management on a full scholarship.