Living with Lupus
Unlike the average college student, Jordan Pietrafitta cannot simply brush her school-work-life stress aside and complete her tasks accordingly; she is forced to deal with the physical implications that may occur as a result of her stress. Pietrafitta, a senior double-majoring in public relations and English at Penn State University, was diagnosed with an autoimmune disease when she was 15.
Pietrafitta was at a Philadelphia Phillies baseball game with her family when she began experiencing unusual and unexplainable pain in her thumbs. After days of continuous pain in her thumbs and wrists, Pietrafitta sought medical counsel and was directed to the DuPont Children’s Hospital in Delaware.
After a month of diagnostics, the doctors diagnosed her with lupus.
Lupus is an autoimmune disease that does not recognize one’s body as one; the cells of someone living with lupus attack other healthy cells in the body, as if they were bacteria. The complications of lupus can lead to kidney failure or even death.
Pietrafitta says she feels fortunate to have been given the treatment and support that she did at DuPont Children’s Hospital. She says she feels lucky that she was looked after by professionals who were able to catch the disease after only a month of diagnostics, while the common timespan it takes to find and diagnose lupus can take years.
Though she was provided with medication that would help treat the symptoms of her illness, Pietrafitta says she will have to live with lupus for the rest of her life.
In the summer of 2015, going into her junior year of high school, Pietrafitta began to experience severe joint discomfort. The pain in her joints were so severe that it hurt her to even muster up the strength to get off her couch and get in the car to go to the hospital.
“I couldn’t move my body without being in excruciating pain. There were points when I was on the couch in my house, and I didn’t move from the couch because it was the most comfortable place to lay," Pietrafitta says. "Eventually, my parents said, 'This needs to stop; we need to take you to the hospital. You can’t just keep going through this.' I think it was just causing my parents a lot of pain to watch because they didn’t know what to do.”
Once there, doctors told Pietrafitta that her agony was a symptom of her lupus. Pietrafitta had what is known as a “lupus flare,” which also created complications with her kidney. The doctors found protein and blood in her urine, which signified that her kidneys were being attacked by the lupus.
After spending time under the care of her health providers, Pietrafitta was given prednisone and morphine to help alleviate her pain in addition to the regular medications she takes for her lupus. She was also scheduled for a kidney biopsy the following week, where they found damage on the inside and outside of her kidneys. Fortunately, the doctors caught the damage early enough, which allowed them to reverse the damage with more medication.
Lupus is a disease that presents itself due to stress, and can cause severe joint pains if levels of stress become too high. If stress levels reach extreme levels, lupus patients may experience lupus flares, which was the case for Pietrafitta. The pain that someone with lupus may encounter from stress is the body’s way of alerting itself that it needs to slow down, and can often hold a person back from completing a task.
After being treated for her lupus flare, Pietrafitta's parents decided that it would be best if she stayed home under their watchful eye until she became more accustomed to the new changes of stress management and medication.
“My junior year of high school did not really start out the best for me because I had just come off of a lupus flare, I was on so much medication, I couldn’t eat. My stomach hurt all the time – even when I did eat. And I ended up missing 50 days of school," Pietrafitta says. "Luckily, I didn’t fall behind because I stayed pretty on top of my school work and my teachers were really willing to help, which was awesome.”
That same year, Pietrafitta learned that the lupus was affecting her brain. Pietrafitta experienced involuntarily hand movements that caused her hands to constantly move. At some points, her hands looked as though she was playing the piano. A neurologist at DuPont’s Children Hospital, who had 50 years of experience under his belt, said that she was one of three people that he had seen over his entire career whose lupus had affected their brain. Eventually, this was resolved by more medication.
Despite the challenges that her body presents, Pietrafitta say that, while difficult, living with lupus is not impossible. Her goal is to become a professional photographer.
“Ultimately, if I could set a goal for myself – right now I’m 21 – by the time I’m 26, so I’m giving myself a five year goal, I would love to work with famous people, do my own shoots, travel around and take pictures of people and get paid for it. Or, I would want to work for a magazine. It would be so cool to shoot the cover of Vogue," Pietrafitta says.
Pietrafitta's work includes being a freelancer for Champs Sports Bar, a marketing/ photography intern for The Bicycle Shop in State College, a photographer for Penn State’s Movin’ On and a photographer for Valley Magazine. She also began her own photography business her freshman year of college; her portfolio consists of a variety of photos and events ranging from graduation shoots, weddings, concerts, portraits and more. In addition to her photography ventures, Pietrafitta is the Public Relations Director for Valley Magazine and an involved member in the THON community. She is working towards becoming an independent dancer for THON 2020.
She is in the Schreyer’s Honors College at Penn State. Currently, Pietrafitta is working on her thesis paper as she anticipates her graduation in the spring of 2020.To manage stress that may arise from juggling her responsibilities, she sees a holistic therapist, who has provided her with a helpful toolkit to manage her anxiety. Pietrafitta says she hopes she can help raise awareness of lupus, as it is a disease that many people are still unaware of, and works towards the awareness of the disease, in hopes for a cure, by creating her own lupus photography campaigns.
Pietrafitta showcases her work and books clients from her website.
Video: Discovering Lupus
While at an outing with her family, Pietrafitta began to feel pains in her thumbs that seemed unusual. She thought that the pain in her thumbs would eventually subside, and that it was only a minor issue. At the DuPont Children’s Hospital in Delaware, Pietrafitta realized her life would change forever.
