Lupus is often seen as a silent killer, an autoim­mune dis­ease that few peo­ple know about or under­stand unless it affects some­one close to them. But Joki­va, a 21-year old wom­an out of New Orleans, is using her social media pages to change that. On both her Insta­gram account and Tum­blr, she shares accounts of her day to day life with lupus:

http://lupusadvocatekiva.tumblr.com/post/143605373897/introduction-of-myself-hello-my-name-is-jokiva

The Amer­i­can Osteo­pathic Col­lege of Der­ma­tol­ogy describes dis­coid lupus as, “a chron­ic skin con­di­tion of sores with inflam­ma­tion and scar­ring favor­ing the face, ears, and scalp and at times on oth­er body areas.” It is often exac­er­bat­ed by too much expo­sure to the sun. Joki­va has this con­di­tion, but that does not stop her from shar­ing pic­tures on social media and inform­ing oth­ers about her dis­ease despite her admit­ted inse­cu­ri­ties.

via @_indianrosee
via @_indianrosee
via @_indianrosee
via @_indianrosee

Joki­va states that she uses her Tum­blr as a place to vent and escape, and that oth­ers can be dis­mis­sive of the dis­ease, telling her it isn’t that seri­ous or mis­tak­ing her lesions for eczema. But she has expe­ri­enced hair loss, pos­si­ble cel­luli­tis, and has even had her lupus treat­ed with chemo.

She also talks about how lupus has affect­ed her social life at only 22 years old, but Joki­va luck­i­ly has her hus­band as a huge sup­port sys­tem in cop­ing with her ail­ment and states that she is focused on liv­ing the nor­mal life of a young wom­an.

via @_indianrosee
via @_indianrosee

Many times, peo­ple liv­ing with lupus do not have enough ener­gy to spend time with friends, or they become depressed or expe­ri­ence anx­i­ety as a result of cop­ing with the dis­ease. Her Tum­blr states:

Peo­ple Act Like I am not sup­pose to have a nor­mal life Just because i have a con­di­tion i cant con­trol. Stereo­types have though [sic] that i was sup­pose to hand­i­cap myself. Stay in my bed and be sick and lone­ly. And i want oth­ers to know that i do have a life. I am get­ting back in school for Nurs­ing. I have a fam­i­ly, Moral, Goals, and dreams.

I dream big but i use [sic] to be so big on think­ing and car­ing what peo­ple think about me and thats when i say enough is enough. I am a nor­mal girl in a nor­mal world. i go out to eat with friends and i might be in the doc­tors office faith­ful­ly get­ting my check ups and treat­ments but im nor­mal and i am allowed to make mis­takes. Lupus does not define me.

Jokiva’s sto­ry is edu­ca­tion­al, given that black wom­en devel­op lupus at a much high­er rate than oth­ers and face more com­pli­ca­tions. Vis­it the­se sites for more infor­ma­tion about lupus, treat­ment, and research for a cure:

Lupus Foun­da­tion of Amer­i­ca

Web­MD Lupus Cen­ter

Lupus Research Insti­tute

Alliance for Lupus Research

 

Elle

Elle is the edi­tor and cre­ative direc­tor of the YouTube chan­nel and blog, Quest for the Per­fect Curl at www.questfortheperfectcurl.com. Her chan­nel focus­es on nat­u­ral hair, beau­ty, and fit­ness. She loves prod­ucts that smell like dessert, yoga, and glit­ter. Fol­low her @qftpc.

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6 Comments on "This Black Woman is Sharing Images of Her Lupus Flare Ups to Raise Awareness of the Disease"

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NOW WHAT??

She is so strong & beau­ti­ful. Bless her

Pat Hodge
In 2011 I was diag­nosed with der­mamyosi­tis. This dis­ease copies lupus. It affects my mus­cles and skin as well. They put me on immu­ran but it poi­soned me and I end­ed up in the hos­pi­tal for three weeks. I too had to learn to walk and eat again. It also caused me to have a blood clot 2 weeks after being released from the hos­pi­tal so I went back again for a week. I was tak­ing cell­cept. As of June this year I got off of cell cept. I am now tak­ing methotrex­ate and pred­nisone and folic acid. I want… Read more »
supermodelsonya

I have this hor­ri­ble dis­ease and it’s just dev­as­tat­ing.

TWA4now

She is so brave!

Chloe

Lupus has been linked to expo­sure to petro­le­um, petro­la­tum, min­er­al oil, etc., which is the main ingre­di­ent in vase­line, hair grease, baby oil and most hair prod­ucts which are used pre­dom­i­nant­ly by black wom­en and is why its preva­lence is high­er in black wom­en. To err on the side of cau­tion, please read the labels of the hair prod­ucts and lotions you use and avoid using prod­ucts that con­tain petro­le­um and its deriv­a­tives. This won’t cure Lupus but it will remove one of the chem­i­cals that can trig­ger a Lupus out­break.

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