By Hannah Stevens @Hannahshewans
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Videographer / director: Claire Bangser
Producer: Hannah Stevens, Ruby Coote
Editor: James Thorne
At just 23-years-old, Jokiva Bellard is a regular at her local A&E, thanks to countless visits caused by the debilitating autoimmune disease mistakenly attacking healthy tissue - lupus.
The autoimmune disease comes in many forms, with most sufferers experiencing mild symptoms, but for those who suffer from systemic lupus erythematosus (SLE), it can be life-threatening.
When Jokiva, from Sunset, Louisiana, was first diagnosed while studying, she thought that she could just carry on as normal, but she swiftly found out that the disease would change her life forever.
She said: “I found out that I had lupus when I was pretty young, at 17. In the beginning, it wasn’t that bad, it was just more of a skin rash and joint pain and then it accelerated.
“Lupus takes a toll, it can take a lot out of you. It makes you appreciate life way more. Way more than you ever appreciated it.”
After her kidneys failing landed her in A&E, Jokiva lost 50 lbs in just 10 days and realised that she had to take the disease seriously.
Following a second kidney failure, peeling skin lesions began to appear all over her body and she had to endure countless stares and comments from strangers.
She said: “I have it on my hands, on my neck, all over my body really. When my skin really started to get affected, people started looking at me. I even had someone call me a crackhead.”
But after liveblogging an A&E experience on Facebook, Jokiva has used her online presence to raise awareness of lupus and to celebrate her unique beauty - blisters and all.
She said: “Body positivity is basically just y’all loving the skin that you’re in. I could be a print model, I could be that girl that influences other girls that they’re beautiful. Why can’t I be that girl? Why can’t I show my rash beautifully, why can’t I show my battle scars?”
“I have dealt with many negative comments online, I have one that said ‘you should kill yourself’. This generation, this society, this time of social media, we don’t have self-love.
“That’s a problem. We’re so busy putting each other down, that we forget that we need to love ourselves so we can be able to love others.
“I’m going through something that I really don’t understand. I feel like the only person who could understand me is my mum.”
Jokiva’s mum Rubynet Bellard has been battling lupus since she was 23-years-old and knows exactly what her daughter has to endure.
Rubynet said: “I describe lupus as an immune disease that fights against you. It affects your body in many ways, your kidneys, your lungs, your heart.
“It really is like a cancer against your immune system. I’m finding out that I have cousins, aunts, uncles that died from this disease.
“I’m going to fight it as long as I can, I’m going to help my daughter fight it as long I can.”
Jokvia also has fierce support from her husband Howard Rivers.
She said: “Four years of marriage, seven years of being together. I never thought that someone could become a best friend, companion, lovable person, everything I need in one. The ying to my yang, the chicken wing to my thigh.”
The couple have been together since high school and Howard has been by Jokiva’s side since the very beginning.
He said: “My first impression of Jokiva, was her beauty. Her eyes, her laugh, her giggle, everything about her is just amazing. When she was first diagnosed with lupus, I was sad, I didn’t really know what lupus was at that time.
“But I love seeing Jokiva modelling, and being able to prove that she’s still able to do it regardless of her situation. And she does it great!”
Jokiva added: “When I got lupus, it changed me in a better way. It made me be more kind and more patient. Lupus lives for me, but I don’t live for lupus.
“I don’t have to hide who I am, or hide my reflection I can say, ‘hey society, hey world - this is me’.”