Lupus warriors dig deep to fight dreaded disease

Today is International Women’s Day, and the theme for 2019 is ‘#BalanceforBetter’. The aim for this year is to create a more gender-balanced world. However, the theme can be applied to the many female lupus warriors who are making strides on a daily basis as they fight to not just survive, but live.

According to the Lupus Foundation of Jamaica, lupus occurs mostly in young women, at an average age of 22 years. Over the past weeks, The Gleaner has been featuring females living with lupus and the struggles they face.

One lupus warrior, who wished to remain anonymous, shared her story of being diagnosed with lupus after contracting the chikungunya virus (chik-V).

“I remember going to the doctor on more than one occasions and being told that it is a chik-V relapse, but the pain only got worse,” she said. “I remember not being able to wash my dishes as my finger joints hurt and I couldn’t utilise my hands. My ankles and knees were swollen and hurt so badly, I could hardly walk. My neck also hurt to the point where I couldn’t turn it. I was also weak in the mornings and often couldn’t find the strength to get out of bed,” she told The Gleaner.

With a baby only a few months old, she was very stressed and concerned about having a chik-V relapse, so she visited another doctor, who suspected lupus because she had the butterfly rash across her face. After completing tests, the confirmation came, but it made things worse for the lupus warrior.

FIGHTING THE DISEASE

“When I was diagnosed with lupus, I was depressed as I didn’t know much about the disease, and my biggest fear to date is to die leaving my kids,” she said. “I am still not a morning person, but somehow, I find the courage to get up each morning and get my kids ready for school and go to work. I just have to.”

The warrior often asks God, “Why me?” but has since tried to find ways to live with lupus.

“In my first attempt to fight this disease, I changed my job because I was working in the sun, hence, I had recurring flares, and I saw a significant improvement when I stopped working in the sun,” she explained. “In December of 2018, I relocated from Kingston to St Catherine, and I have not had any pain since then,” she told The Gleaner.

Another lupus warrior, Euricka Brown, who recently completed her studies at The University of the West Indies, is looking forward to graduation.

“I worked and sent myself through college despite all the pain I go through daily,” Brown said. “I was not able to walk without feeling pains, and I am afraid to pursue my dreams in modelling due to the intense joint pains that I face.”

Brown has been living with lupus for four years and fears that her future is at stake.

FEARS OF DYING

“Each time I hear of news from social media about death from lupus, I get afraid and I cry because there is so much I want to achieve, but I fear that lupus will cut it short,” she shared with The Gleaner.

Her fears, however, have not kept Brown from her hopes of setting up a lupus foundation in the western region of the island.

“I always want to start a lupus foundation in the western area as I am from Trelawny, and all I need is some support,” she said. “Everything is in Kingston, and not everyone can afford to travel to Kingston to get the necessary treatments, and I know a lot of lupus warriors in the western area who struggle to afford their medical bills, including me,” Brown continued.

The idea for the Euricka Brown Lupus Foundation for Hope was born when Brown entered the Miss Jamaica Universe 2018 with the aim of raising awareness and offering support to others.

“I didn’t hear others talking about lupus, so when I was diagnosed, I was devastated, so I want others to be informed about lupus so they can have the support they need to cope,” Brown said.

There are many lupus warriors who have been finding ways to balance their daily lives and not have them overshadowed by lupus. Today, the warriors who continue to live with lupus are encouraged to keep fighting.