“I’m in a ginormous blue shirt and red hat,” was how Dana Valletti described herself to me as I headed to the Dimond Library to meet up with her. We laughed about how it felt like a blind date. This is the type of person I met when I introduced myself and shook hands with Valletti: bubbly, confident and a jokester. You would never guess that Valletti has had lupus since she was 13 years old.
Lupus is an autoimmune disease that can infect almost any organ in the body, causing it to inflame. Those who have lupus are born with the gene, and it typically takes something as simple as the flu or stress to trigger it. Valletti is one of an estimated 1.5 million Americans to have been born with the gene. When Valletti was in the eighth grade she contracted a bacterial virus.
“I went to Canobie Lake Park, [I was] having a great day, and suddenly I was like ‘Oh, I feel kind of sick.’ I thought I was just motion sick…from rollercoasters, fair food, whatever,” Valletti said. When she didn’t start to feel better after a week, her parents contacted a doctor who told them it was just a virus and that all she could do was wait it out.
Months went by and Valletti was still feeling ill; that was when the inflammation started to kick in. It started in her joints, causing arthritis. “I’d wake up in the morning and my feet would be so bad that I would just fall over and not be able to walk,” she said.
Because there is no one specific test for lupus, it took six months for doctors to diagnose her.
“I didn’t really realize how much of an impact it was going to have,” Valletti said, reflecting on how she felt when she received the diagnosis. At that time, the only things affecting her were the arthritis and some stomach problems, which she felt were somewhat manageable. What originally concerned Valletti the most was that she was missing school and wasn’t able to spend time with her friends, as chronic fatigue is a symptom of lupus.
A hockey player since the age of two, Valletti also played guitar, piano and base in a band at the time of her diagnosis. Lupus caused her to take time off from the rink and quit her band all together.
Valletti got used to dealing with her sickness and had it under control throughout high school, until her senior year. In January 2015, she noticed that she was getting extremely sore after hockey practice, more so than what was usual. Unbeknownst to her, she had caught the flu and lupus was triggering the inflammation of her muscle cells. After spending a week at one hospital with no clear consensus of what the problem was, Valletti was transferred to Massachusetts General Hospital. She was rushed over in an ambulance, which she thought was silly at the time. She felt fine. However, as she arrived, a flare of pancreatitis struck her.
“It’s the third most painful thing a human can endure medically,” Valletti said on pancreatitis. And then, to make matters worse, she developed hepatitis.
Valletti spent three weeks in MGH, missed her hockey season and didn’t recover enough to return to school until May, two weeks before graduation. Her teachers were understanding of what she was going through, however, and she was still able to graduate on time.
Valletti started at UNH in fall 2015 as a biochemistry major. She knew she wanted to use her experience with lupus in some way in her professional life. However, it wasn’t until this past summer, after she attended the National Lupus Advocacy Summit in Washington, D.C. with her mom, that she decided how she would incorporate the issue into her career path.
The D.C. event’s main purpose is to lobby for more medical research for lupus. Part of this process was Valletti telling her story to attendees of the event, which included senators and Capitol Building workers. According to Valletti, the whole day was an overall success.
Valletti realized that while lupus is a widespread disease, the awareness of it is lagging far behind. Since being diagnosed, she’s met other kids dealing with the same disease who aren’t open with discussing their experiences. She, however, is comfortable with discussing the topic and that is what kick-started her decision to switch her major to communications while minoring in biomedical science.
Valletti said she feels that there is a lack of connection between the public and the people doing the actual research on lupus. She would like to help bridge this gap. Along with speaking on Capitol Hill, Valletti spent part of her summer interning for the Lupus Foundation of New England. She hopes that this experience might lead to a potential job for her with the organization after graduation.
Lupus hasn’t restricted Valletti from doing what she loves. “I have to be really careful, but I mean I’m still 19 years old, I still like to not be careful,” Valletti said. She currently plays on the women’s club hockey team and has recently signed up for three clubs on campus; Love Your Mellon, Friends of Jaclyn and the co-ed business fraternity, Alpha Kappa Psi.
Valletti said that she feels lucky to have such a solid support system comprised of her family, neighbors, team and friends. This upcoming Saturday, Valletti will participate with family and friends in the 24th annual Lupus Walk on the Charles at the Richard T. Artesani Park on Soldiers Field Road in Brighton, Massachusetts.