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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