Cherisse Moe

The Michael Jack­son biopic “Michael” con­tin­ues to pull in mas­sive crowds and top en­ter­tain­ment head­lines world­wide. And right now, it has got every­body talk­ing about vi­tili­go again.

Kar­la Ramoo, a for­mer Guardian Me­dia pho­tog­ra­ph­er di­ag­nosed in 2006, saw her own sto­ry re­flect­ed in the King of Pop’s strug­gle. When she watched the movie re­cent­ly, it hit home.

“Them con­firm­ing that it was vi­tili­go that he had, I un­der­stood why he would want to change his skin to one even com­plex­ion,” she says. “He was a per­fec­tion­ist and he want­ed to look his best. Me be­ing a pho­tog­ra­ph­er, be­ing in front of the crowd all the time, it plays men­tal­ly on you—at least in the be­gin­ning. I un­der­stand what he may have been go­ing through. See­ing your­self change is a dif­fi­cult thing. If you put on weight, you can ex­er­cise; but when there is some­thing hap­pen­ing to you and you can­not fix it, it can be heavy to deal with.”

Kar­la’s vi­tili­go start­ed small. She no­ticed white spots on the tips of her fin­gers, right un­der her nails. She thought it was prob­a­bly just a re­ac­tion to laun­dry de­ter­gent. The di­ag­no­sis was hard, and ac­cep­tance didn’t come eas­i­ly.

“When I re­searched what it is, I couldn’t be­lieve it. The doc­tor didn’t take any skin sam­ples or any­thing, so I was think­ing maybe he wasn’t too sure what he was say­ing. I was just in dis­be­lief,” she re­calls.

For the first five years, the con­di­tion stayed qui­et — just a few faint patch­es on her nose and fin­gers. Then it be­gan to spread, and Kar­la had to fig­ure out how to live with it on a dai­ly ba­sis.

Af­ter leav­ing the me­dia and mov­ing in­to cor­po­rate work, she start­ed cov­er­ing up. Long-sleeve shirts, socks pulled high, some­times even gloves. “I didn’t want to touch peo­ple—not that vi­tili­go spreads in any way, but I didn’t know how the oth­er per­son would feel. I didn’t know what their per­spec­tive of me was,” she shares.

These days, about 75 per cent of her body is af­fect­ed, with her hands at around 30 per cent. She burns eas­i­ly now, es­pe­cial­ly when she’s out shoot­ing Car­ni­val cov­er­age or re­lax­ing at the beach.

“Vi­tili­go is an au­toim­mune con­di­tion where your body’s im­mune sys­tem at­tacks its pig­ment-con­tain­ing cells, known as melanocytes,” ex­plains Dr Chris­ma Ma­haraj, Di­rec­tor of Val­sayn Der­ma­tol­ogy Clin­ic.

“Pa­tients with a pos­i­tive fam­i­ly his­to­ry of vi­tili­go or oth­er au­toim­mune dis­eases would be at a greater risk of de­vel­op­ing it. While there is no racial predilec­tion, it can ap­pear to be more promi­nent in dark­er skin types, where the con­trast is more vis­i­ble be­tween rich­ly melanat­ed skin and the patch­es of vi­tili­go, which are white in colour.”

Health sta­tis­tics show vi­tili­go af­fects rough­ly 0.5 per cent to one per cent of the world­wide pop­u­la­tion—that’s around 70 mil­lion peo­ple. Across so­cial me­dia plat­forms, scores of threads are cur­rent­ly dis­cussing these dy­nam­ics, with peo­ple shar­ing their per­son­al and fam­i­ly sto­ries, seem­ing­ly freer and more con­fi­dent to talk about it.

“I used to as­sume on­ly black peo­ple can get it un­til I saw some­one who is Cau­casian has it,” one com­menter ad­mit­ted on­line. An­oth­er shared, “My daugh­ter had no signs when she was a ba­by but now, at nine, it’s start­ing on her legs and she has a small patch by her eye.”

One of Kar­la’s biggest ad­just­ments was hav­ing to re­think how she pre­sent­ed her­self in pub­lic. “I was nev­er re­al­ly a big make­up per­son. So hav­ing to put on make­up every day, I feel some­times it’s fake. I used to just like my lip­gloss and eye­lin­er and I was ready to roll. But now I have to put on foun­da­tion. I hard­ly wear shorts any­more, and I used to love to show my legs. If I’m go­ing some­where for­mal or to a wed­ding and want to have a lit­tle more skin out, I feel un­com­fort­able buy­ing cer­tain clothes. It’s chal­leng­ing hav­ing to change my whole co­or­di­na­tion to suit it.”

The hered­i­tary na­ture of the con­di­tion al­so in­tro­duces anx­i­ety for the fu­ture. Kar­la’s aunt had vi­tili­go, though Kar­la nev­er met her, on­ly learn­ing lat­er that she was com­plete­ly cov­ered by her 60s. “I would hope that none of my chil­dren get it or even their chil­dren. But if they do, it is part of life. The good thing is, the younger gen­er­a­tion is dif­fer­ent. They’re very bold, so I’m sure they’re gonna be fine. But it is a tough ad­just­ment to live with.”

Pub­lic per­cep­tion lo­cal­ly re­mains an up­hill bat­tle. Dr Ma­haraj points out that while in­ter­na­tion­al high-pro­file fig­ures like su­per­mod­el Win­nie Har­low have suc­cess­ful­ly re-framed vi­tili­go as a beau­ti­ful vari­a­tion of skin pig­ment, here in the Caribbean, stig­ma still lingers. She be­lieves it is the per­fect time, with the spot­light on vi­tili­go, to push back against the myths, not­ing that the med­ical land­scape has evolved dra­mat­i­cal­ly since Kar­la’s di­ag­no­sis.

“There are lots of new­er ther­a­pies avail­able to treat vi­tili­go and sev­er­al tried-and-true treat­ments that can make a dif­fer­ence, es­pe­cial­ly when the con­di­tion is de­tect­ed ear­ly,” Dr Ma­haraj tells us. Der­ma­tol­o­gists now im­ple­ment strict lifestyle mod­i­fi­ca­tions, in­clud­ing rig­or­ous SPF rou­tines and pro­tec­tive cloth­ing. They al­so warn pa­tients about the Koeb­n­er phe­nom­e­non—a unique trait where vi­tili­go can be in­duced or wors­ened by skin trau­ma, fric­tion, or scratch­es. Cru­cial­ly, man­ag­ing phys­i­cal and emo­tion­al stress is now con­sid­ered an es­sen­tial piece of the puz­zle, as mod­ern stud­ies di­rect­ly link stress to the ex­ac­er­ba­tion of au­toim­mune flares.

To­day, Kar­la has re­claimed her nar­ra­tive. While she open­ly ad­mits the con­di­tion al­tered her once-un­shake­able con­fi­dence—re­call­ing a time when she walked in­to any room know­ing all eyes were on her—she re­fus­es to let it di­min­ish her life or her work. “I am still beau­ti­ful,” she de­clares.

Kar­la of­fers a sin­cere mes­sage for oth­ers nav­i­gat­ing a new di­ag­no­sis: “If it can’t be cured, it’s okay. You can wear make­up. And for the men, if you don’t want to wear make­up, it is part of you—em­brace it. For women who choose not to wear make­up, it’s fine. Walk with a lil at­ti­tude, smile, be pleas­ant, and just live. Vi­tili­go doesn’t change who you are as a per­son. Go out there and be your­self.”

Fast Facts: Nav­i­gat­ing a Di­ag­no­sis

● The Di­ag­nos­tic Process: While many stan­dard cas­es can be iden­ti­fied through a vi­su­al clin­i­cal ex­am­i­na­tion un­der a spe­cialised UV light called a Wood’s lamp, a der­ma­tol­o­gist may oc­ca­sion­al­ly per­form a skin biop­sy or blood tests to rule out over­lap­ping con­di­tions.

● Sup­port Frame­works: Nav­i­gat­ing the psy­choso­cial as­pects of the con­di­tion is in­creas­ing­ly sup­port­ed by in­ter­na­tion­al net­works, such as the Glob­al Vi­tili­go Foun­da­tion and World Vi­tili­go Day ini­tia­tives, which fo­cus on pa­tient em­pow­er­ment, men­tal well­ness coun­selling, and com­mu­ni­ty in­te­gra­tion.

● De­bunk­ing Myths: Clin­i­cal ed­u­ca­tion em­pha­sis­es that vi­tili­go is strict­ly non-com­mu­ni­ca­ble and can­not be trans­mit­ted through touch, sali­va, or blood shar­ing. It is not a form of skin can­cer, nor is it caused by di­etary choic­es or chem­i­cal bleach­ing.

● Mod­ern Re­search Fron­tiers: Cur­rent der­ma­to­log­i­cal clin­i­cal tri­als are heav­i­ly fo­cused on tar­get­ed top­i­cal JAK in­hibitors and ad­vanced cel­lu­lar graft­ing tech­niques (such as melanocyte-ker­atinocyte trans­plan­ta­tion), aimed at sta­bil­is­ing ac­tive flares and re-pig­ment­ing lo­calised ar­eas.