Dr Safeeya Mo­hammed

Guardian.wemagazine@gmail.com

“I ex­pe­ri­enced shock, con­fu­sion, and a pro­found sense of loss when I was giv­en this di­ag­no­sis,” Aken­na Kublal open­ly shared.

She was work­ing in the avi­a­tion in­dus­try at the time of ex­pe­ri­enc­ing these trans­for­ma­tive changes with­in her skin.

“Work­ing in this in­dus­try, where ap­pear­ance and vis­i­bil­i­ty were para­mount, it was par­tic­u­lar­ly dif­fi­cult to come to terms with the rapid changes in my phys­i­cal ap­pear­ance. It was a di­ag­no­sis that forced me to re­de­fine my iden­ti­ty.”

The di­ag­no­sis . . . vi­tili­go.

Vi­tili­go, a rare con­di­tion af­fect­ing on­ly about one per cent of the world pop­u­la­tion, caus­ing the skin to lose its nat­ur­al colour. There is cur­rent­ly no cure for vi­tili­go. Sci­en­tists have not yet dis­cov­ered the ex­act cause of this skin dis­or­der, in which the skin cell melanocytes that pro­duce melanin are de­stroyed by the body’s im­mune sys­tem, caus­ing the skin to lose its colour and re­sult­ing in whitish, smooth patch­es on the skin.

Vi­tili­go may al­so af­fect the pig­ment of oth­er parts of the body in­clud­ing the hair, eyes, and in­side of the mouth. How­ev­er, it can be life-al­ter­ing in the sense that it can cause low self-es­teem and there are many doc­u­ment­ed cas­es com­pli­cat­ed by de­pres­sion.

Daunt­ing chal­lenges in the be­gin­ning

“My jour­ney with vi­tili­go has been filled with chal­lenges that have test­ed my re­silience. I had to face many hurt­ful com­ments made by strangers. It was dis­heart­en­ing to en­counter cu­rios­i­ty and hear com­ments from per­sons point­ing at me. Al­though I un­der­stood that most peo­ple were sim­ply cu­ri­ous, it was nev­er easy to re­peat­ed­ly ex­plain the rea­sons be­hind my ap­pear­ance.

“Nev­er­the­less, through self-ac­cep­tance and ed­u­ca­tion, I learned to em­brace my con­di­tion and uti­lize it as a tool to raise aware­ness and ed­u­cate oth­ers about vi­tili­go.

“Ini­tial­ly, I cam­ou­flaged it, even re-learnt dif­fer­ent tech­niques in ap­ply­ing make­up to con­ceal the de­pig­ment­ed ar­eas. It felt over­whelm­ing, and there were times when I lost in­ter­est in make­up al­to­geth­er. How­ev­er, through pa­tience, prac­tice, and the guid­ance of make­up artists who spe­cial­ize in work­ing with in­di­vid­u­als with vi­tili­go, I grad­u­al­ly de­vel­oped tech­niques to treat with my skin con­di­tion. Most times I wear my nat­ur­al beau­ti­ful skin and em­brace me!”

As Kublal moved through her jour­ney, she de­scribed how her un­wa­ver­ing faith in God be­came her an­chor. Through con­ver­sa­tions with oth­er pa­tient with vi­tili­go and health pro­fes­sion­als, her aware­ness and self-ac­cep­tance grew.

“I have come to un­der­stand that true beau­ty em­anates from with­in, and tak­ing care of my men­tal health is cru­cial for over­all well-be­ing.”

Labour of love

Armed with knowl­edge and the wis­dom of her ex­pe­ri­ences and that of oth­er pa­tients, Kublal re­de­fined her jour­ney with vi­tili­go. Turn­ing her pain in­to pur­pose, she de­vel­oped this first of its kind in Trinidad and To­ba­go, an em­pow­er­ment event dis­cussing vi­tili­go, aim­ing to im­prove aware­ness and ac­cep­tance. The pri­ma­ry aim of Labour of Love was to cre­ate safe spaces where women can feel seen, heard, and sup­port­ed, aligned to the World Vi­tili­go Day, June 25.

“It is through these av­enues that I am able to em­pow­er oth­ers, in­spire self-love and re­silience, and pro­mote per­son­al growth. Wit­ness­ing the trans­for­ma­tive im­pact these en­deav­ours have on in­di­vid­u­als is tru­ly re­ward­ing.”

Ad­vo­cat­ing lo­cal­ly, led Kublal to the in­ter­na­tion­al space, open­ing the op­por­tu­ni­ty to speak at the Glob­al Vi­tili­go Foun­da­tion’s an­nu­al con­fer­ence.

“Ad­vo­cat­ing for in­creased aware­ness of vi­tili­go has been an­oth­er sig­nif­i­cant ac­com­plish­ment that holds a spe­cial place in my heart. By speak­ing at in­ter­na­tion­al con­fer­ences and events, I have the priv­i­lege of shar­ing my jour­ney and in­sights, learn­ing from oth­ers about vi­tili­go, and dis­pelling mis­con­cep­tions sur­round­ing the con­di­tion.

“This plat­form al­lowed me to con­nect with in­di­vid­u­als from di­verse back­grounds and cul­tures, fos­ter­ing a greater un­der­stand­ing and ac­cep­tance of vi­tili­go. More­over, it pro­vides an op­por­tu­ni­ty to in­spire those who may be fac­ing sim­i­lar chal­lenges lo­cal­ly, re­mind­ing them that they are not alone and that their unique jour­ney holds pur­pose and val­ue.”

Ad­vice to oth­ers with vi­tili­go

“Find a com­mu­ni­ty! When deal­ing with a con­di­tion like this it is so im­por­tant to net­work and find per­sons who al­so un­der­stand what you’re fac­ing, be­cause some­times those clos­est to you may not un­der­stand how it deeply af­fects you. I now know many oth­er amaz­ing per­sons in Trinidad with­in the vi­tili­go com­mu­ni­ty who have been fight­ing this fight be­fore me, and a lot of them still do, by sup­port­ing each oth­er and shar­ing our sto­ries, our net­work builds and keep us all go­ing.”

Kublal em­pha­sized: “Vi­tili­go does not de­fine a per­son’s worth or beau­ty. It is es­sen­tial to cul­ti­vate self-love, cel­e­brate in­di­vid­u­al­i­ty, and rec­og­nize the unique qual­i­ties that make each of us spe­cial. Sur­round­ing one­self with a sup­port­ive com­mu­ni­ty, seek­ing pro­fes­sion­al help if need­ed, and find­ing in­ner strength through faith and per­son­al de­vel­op­ment are al­so cru­cial in nav­i­gat­ing the chal­lenges that may arise. It is not a one size fits all kind of thing.”

“Look be­yond what you see when you look in the mir­ror and fo­cus on what God sees in your heart.”

- Share your sto­ry of Re­silience

with us, turn­ing pain in­to pur­pose, your chal­lenges, your tri­umphs.

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