Living with lupus: An Ole Miss student’s battle with chronic illness

Posted on Oct 12 2016 - 8:01am by Mia Sims

Eighteen-year-old Jalexcia Heard was a junior in high school when she started experiencing pain her doctors could not understand. She was not aware at the time, but the pain was the beginning of a five-year battle that would change her life forever.   

In October 2011, Heard visited a physical therapist who referred her to a doctor. The doctor conducted tests and diagnosed Heard with Rheumatoid Arthritis.  

(Photo by: Cameron Brooks)

(Photo by: Cameron Brooks)

Heard said she kept having symptoms commonly associated with Systemic Lupus Erythematosus, or lupus, an autoimmune disease that can affect almost every organ in the body. A few months later, Heard was rushed to the emergency room for back pain.

“They gave me antibiotics and discharged me,” Heard said.  “When I made it home, I took the medicine and my vision was blurred.  I couldn’t see anything.  I threw up everywhere. I went back to the hospital, but they couldn’t find anything wrong.”

Heard was sick after her discharge from the hospital and antibiotic treatment, so she visited doctors in Jackson.

She was diagnosed with lupus on March 11, 2012.  

The symptoms of the disease can range from being virtually harmless to life threatening. According to the S.L.E. Lupus Foundation, 90 percent of lupus patients are young women.

Most victims first develop signs and symptoms between the ages of 15 and 44 and affects more females than males. The illness more common in minorities as well.

Statistics show African Americans and hispanics with lupus tend to develop the disease earlier in life, experience greater disease activity such as kidney problems and have more complications overall than caucasian patients.

Heard, who is now a senior social work major, said the illness is getting worse as time goes by.

“In February 2015, I was diagnosed with Avascular necrosis, which is the deterioration of the bones,” she said. “I was having pain in my left hip. I thought it was from exercising, but the bone in my hip was slowly rotting away.”  

Avascular necrosis develops from the prolonged use of steroids, which Heard takes to ease the pain lupus causes. Eventually, Heard was restricted to a wheelchair because she could no longer walk her sophomore year.  If any more pressure was applied to her hip, she would have been disabled permanently.

(Photo by: Cameron Brooks)

(Photo by: Cameron Brooks)

“If I didn’t take the steroids my body would hurt really bad,” Heard said. “So, by taking them, I was ruining my body, but I needed them still.”

Later that year, Heard had a core decompression and a hip replacement, which she and her family decided was the best option to restore her ability to walk.

“The core decompression was the way to remove the blockage in my hip,” Heard said. “I was still having a lot of pain, so we decided to go through with the hip replacement.  If I didn’t do it, my bone would crumble, and I’d be in a wheelchair for the rest of my life.”

After the hip replacement, Heard rehabilitated slowly. July 2016 arrives and so do more difficulties. Heard completely lost her appetite and started throwing up more than usual.

“Anything I ate or drank would come right back up,” Heard said. “My family kept telling me I was losing too much weight. I couldn’t eat.”

Heard called her doctor and was told her symptoms weren’t related to lupus.  The doctors ran blood tests and admitted her into the emergency room. Doctors originally diagnosed Heard with pancreatitis and said her symptoms were not caused by lupus. Heard said she was really dizzy and couldn’t sit up or eat.

“I needed help with everything,” she said. “My blood pressure was really low and and my pulse was high. While I was laying on the hospital bed, I had a really sharp pain in my stomach.  I started screaming.  It hurt so bad, I seriously thought I was about to die.  My friend came to the doctor with me.  The doctor told her privately that I almost waited too late to come in.”

Apart from how it affects patients physically, lupus affects victims financially.

Medical costs can be a major burden for chronically ill student. Heard said sickness and pain from her disease comes and goes, but it pulls a substantial amount of money with it each time.

“School and medical bills add up,” Heard said. “We just haven’t paid them. I mean, I have to visit the doctor every three months, so I’m probably over $20,000 in debt, just from medical costs, that doesn’t include school.”

According to Financial Aid Director Laura Brown, the Office of Financial Aid is not aware of any institutional or private scholarships offered specifically to students with medical conditions.

“There is an Ole Miss fund for one-time emergencies that can sometimes be tapped,” Brown said, “But this is restricted to small, one-time micro-grants, and would not normally be available to students with ongoing, chronic medical conditions.”

(Photo by: Cameron Brooks)

(Photo by: Cameron Brooks)

Brown said students can disclose this information in a financial aid or scholarship appeal to express that they have struggled from extenuating circumstances.  The student or family can also request re-evaluation of the student’s eligibility for need-based financial aid.  

In an effort to raise awareness for lupus and help raise money for Heard, senior criminal justice major Tinecia Francis has partnered with Phi Alpha Delta Law Fraternity.

Francis’ campaign fund will end on Feb. 25 and all proceeds will go toward Heard and a lupus foundation of her choice.

“I wanted to do this to help her and her family who are already going through so much, but also to raise awareness of lupus, which affects African-American women more than any other group,” Francis said.

Francis said she met Heard her freshman year in an environmental writing class.   

“Honestly, she is going through so much in her life but meeting her you wouldn’t even know it and that is what made me fall in love with who she is even more,” Francis said.

Heard said she is determined to finish school no matter what.

“I love school, and I have people looking up to me,” Heard said. “I have to finish for everyone who looks to me for inspiration. Also, I don’t like to see my mom down. So I just keep pushing. I can’t let people down.”