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Never give up

The nurse said it was normal to be nervous at doctor appointments, so they took her blood pressure again.

 

It was still high.

 

After a few more tests, Anna’s regular school physical revealed she needed to see a specialist.

 

There were abnormalities.

 

“I remember my kidney doctor kept saying lupus over and over again,” Anna recalls. “But I was praying to God that it was not lupus.”

 

A kidney biopsy confirmed her worst fear, 12-year-old Anna had class 4 lupus nephritis, an autoimmune disease that causes inflammation in the kidneys, making them unable to properly remove waste from blood or control the amount of fluids in the body.

 

“I felt like the world had just stopped,” she said.

 

Rather than spending her seventh-grade spring break having fun, Anna began treatment and tried to understand what her diagnosis meant. Her family was connected with Lupus Foundation of America, Heartland Chapter, a United Way supported Agency, to help with the process. She and her family went on to learn as much as they could about the disease by studying, attending conferences and participating in Walk to End Lupus Now in St. Louis.

 

Being young and trying to find your place in the world is difficult enough without a diagnosis like Anna’s.

 

“Everybody was asking about me,” she said. “But I was just very hesitant to say that I was different, and I have a disease. So it was hard for me to tell people.”

 

Lupus Foundation of America sent Anna to a camp they host for young women diagnosed with lupus. At camp, Anna was surrounded by other girls who were going through similar experiences.

 

“It was nice to be able to relate with others and hear about their experiences,” she said. “We shared a lot of laughter and tears, but most of all I made new friendships with others who were going through what I was going through.”

 

Suddenly, Anna had a whole support group of girls from across the nation helping her fight the disease.

 

“We're always just there for each other,” she says. “It's like a new family that I was put into, and I just thank God that I was given these girls to be by my side and be very supportive even if we are miles apart.”

 

Anna finds her strength from her new friends from camp and her incredibly supportive family and friends. She’s determined to fight the disease and have a normal life.

 

“I'm fighting for myself, but I feel like I'm also fighting for everyone who has helped me and everyone who's there for me, because I know that I didn't do this alone, because I had people there by my side,” Anna says. “I'm fighting for all of us.”

 

Now 15, Anna is an avid volleyball player and snagged a spot on a select volleyball team – a spot that is normally reserved for girls a year older. Her fight with lupus has inevitably taught her some important life lessons.

 

“If our team is down or something, I always talk about not giving up and that we can always turn things around,” she says.

 

Even during school, she knows to never give up because she is strong and can do anything.

 

One day, she hopes to work in the medical field with kids, maybe as a nurse, to help kids feel cared for and loved while they’re facing something world-stopping.

 

About the Lupus Foundation of America, Heartland Chapter

 

The Lupus Foundation of America, Heartland Chapter is part of a national force devoted to solving the cruel mystery of lupus while providing caring support to those who suffer from its brutal impact. Through a comprehensive program of research, education, support, and advocacy, we lead the fight to improve the quality of life for all people affected by lupus.

 

The Heartland Chapter provides programs and services for the estimated 50,000 people living with lupus in Missouri, eastern Kansas and southern Illinois. We provide a variety of services including lupus information and referral, monthly support groups, educational workshops and conferences, and a summer camp for girls with lupus.

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