No longer alone
OLINDA Teenager Rowan Mulligan saw doctor after doctor to diagnose her array of aliments including severe rashes on her face, swollen joints and a cough that sounded like a duck honk.
“They (her parents) sent me to every doctor possible,” the Seabury Hall senior recalled Monday. “I went to a pulmonary doctor to see if I had asthma or something. I had just gotten my braces off so they put a tube down (my throat) to see if one of the brackets came loose, and couldn’t find anything. I got allergy tests because I’m allergic to German cockroaches and cats, but they couldn’t find any conclusive results.”
A pediatric rheumatologist on Oahu finally gave them the answer: lupus.
“I thought it was a disease that primarily affected older people, so I was really surprised when he told me,” she said. “I had to ask him, ‘What is lupus?’ ”
Lupus is a chronic autoimmune disease in which the immune system turns against the body and attacks healthy cells and tissues, according to the Alliance for Lupus Research website. The symptoms aligned with her health problems – extreme fatigue, painful or swollen joints, unexplained fever, skin rashes and kidney problems. Nine out of 10 people with lupus are women.
Lupus cannot be cured but is manageable, though treatments may have serious side effects, according to the website.
Looking back, Mulligan recalled experiencing some early signs of lupus as a middle-schooler. She was diagnosed with Raynaud’s disease – a condition that causes some areas of the body to feel numb and cool to cold temperatures or stress. It also is a symptom of lupus.
At the beginning of her sophomore year, she was plagued by a “super intense cough.”
“People were comparing it to duck honks or sea otter honks,” she said. “Everyone could hear me so I got to be well-known around campus.”
The cough was followed by a weeklong fever and cold. Then things got more serious.
“My joints started swelling, and I couldn’t really walk or anything,” she said. “I got mouth ulcers and bumps on my head, it was really weird. The doctors didn’t know” what she had.
Her diagnosis came about three years ago, when she was 15. Mulligan is very young to be afflicted with lupus. The teenager struggled with the diagnosis and the illness. While her mother heavily researched the disease, Mulligan chose not to.
“I didn’t really want to freak myself out,” she said. “I figured whatever lupus was to me would come.”
“No one in the family was even allowed to say the word ‘lupus.’ It was like Voldemort,” she said, referencing the villain in the “Harry Potter” series.
Mulligan chose to keep her illness hidden from her classmates with the exception of her best friends and select faculty.
Alan Hodara, Mulligan’s adviser and English teacher, was one of the few people at Seabury Hall to learn of her disease and was sworn to secrecy, because she “didn’t want any kind of special treatment” from her teachers and classmates.
Mulligan called 11th grade her “transition and adjustment year” as she dealt with her physical ailments, adjusted to her medications and handled the occasional “flare-ups.”
Heading into her senior year, Mulligan continued to keep her secret while carrying a heavy college prep load, including three Advanced Placement courses.
“Her schedule is about the most rigorous schedule you can have at Seabury,” Hodara said. “That girl, she’s something.”
Mulligan also taught hula to many of her classmates for their performance at the school’s He Ha’upu Aloha Day, practicing in the sun, when she really shouldn’t have.
“She was determined to see it through,” Hodera said. “She was out there for every practice.
“That was just Rowan, she wouldn’t let it slow her down.”
In addition to staying out of the sun, Mulligan needs to reduce her physical activity, and she bruises easily. She lifted her pant legs to display bruises on each of her shins.
“I’m kind of a clumsy person, so I don’t know if I bumped them, but I think the disease itself and medication causes the bruising,” she said.
It was lonely keeping the secret, she conceded. Last month, Mulligan decided to come out.
“I think I reached a point where I was comfortable with the disease and confident in myself to tell other people about the disease to increase the awareness on Maui,” she said.
On April 30, the 17-year-old revealed her secret to the Seabury Hall student body, giving them a presentation on lupus and informing them of her joint effort with other schools and students to raise awareness on Maui.
Stepping off the stage, she was no longer alone.
“We got an overwhelming amount of support,” Mulligan said, seated next to her co-president of the school’s Interact Club, Isabella Jorgensen.
She and Jorgensen have been working with six other Interact clubs from Maui high schools to raise money for the Lupus Foundation of America, a nonprofit group dedicated to finding the cause and a cure for the disease. They have been selling purple bracelets and pins and lavender, donated by Ali’i Kula Lavender Farm, for the foundation and to mark Lupus Awareness Month on Friday.
“My dream is to have the entire island wearing purple on Friday,” Mulligan said.
Jorgensen said that the club sold a lot of bracelets following Mulligan’s presentation, which she called “amazing.”
“I took a speech class, and I gave a presentation, but it was nothing like Rowan’s,” she said. “Everybody was really enamored. Usually, you would find a presentation about a disease to be boring . . . but Rowan’s made everyone sit up in their seats.”
Fellow seniors Fletcher Prouty and Carter Umetsu were impressed.
“She can deal with everything at school, outside of school and have this at the same time – it’s incredible,” Umetsu said.
Mulligan thanked her family, friends and the community for helping her organize her lupus awareness drive. She will have an information booth Saturday at the annual Seabury Hall Craft Fair, where donations will be accepted.
“It definitely took a village to get this project to where it is now,” she said.
* Chris Sugidono can be reached at firstname.lastname@example.org.