1 in 250
When Kristen Boyd was 15, she found out she had lupus. She was a high school sophomore living in southwest Florida. It was the day of her AP Environmental Science exam. Her appointment was a two-hour drive away, so she lied to the school in order to leave earlier than expected from her exam. Her teacher was aware of her situation and told her exactly what to tell the school office in order for her leave. With her nerves in full force, she took the phone from the teacher who was proctoring the test and spoke to the school office. Her mom waited patiently outside in the minivan.
“She asked me if I was really REALLY sick. I repeatedly told them that I would be sick if I couldn’t leave,” Kristen said.
She was finally let go and walked out to the car. She and her mom were silent the whole two hours to the doctor’s office.
“IMAGINE THE ABSOLUTE WORST YOU’VE EVER FELT, MAGNIFY THAT BY TEN AND THAT STILL ISN’T ACCURATE ENOUGH.”
Lupus is an autoimmune disease that occurs when your body’s immune system attacks its own tissues and organs.
Lupus is most common in women ages 14 to 45, and as many as 1 in 250 people can develop the disease. Some well-known people who suffer from lupus are Selena Gomez, Nick Cannon and Seal.
“MY MOM SAID SHE WILL NEVER FORGIVE HERSELF FOR MISSING IT.”
Flash back two years.
Symptoms started when she was 13. Constant fatigue, a rash on her face, and pain all over her body. Her mom, who works in the healthcare field, didn’t see anything wrong at first. After all, teenagers tend to be lazy complainers who will do anything to miss school. Right? Kristen was different. She loved school and hated that she wasn’t doing well. Falling asleep in class and failing tests. This wasn’t normal.
A trip to the dermatologist would change her life. The doctor was treating her for acne and noticed the rash on her face hadn’t gotten better since her last visit. He immediately referred her to a pediatric rheumatologist.
“Her dermatologist took one look at me and said, ‘Why didn’t you call me?’ I was taken aback,” said Kathleen Boyd, Kristen’s mother. “He was the first professional to put forth the possibility of lupus.”
“SCHOOL WAS A FICKLE THING.”
The next few years of high school were difficult. Sophomore year was the first year she didn’t pass a class, ever. She ended up getting a D in AP Environmental Science, which she said was a miracle in itself.
Her intense, aching, physical pain was soon accompanied by emotional pain. She didn’t tell anyone at school about her disease. The only people who knew were family. Mom, Dad and sister Katie.
“Around the time she was diagnosed, we were not that close, and instead of making us closer I think it pushed us further away,” said Kristen’s twin sister, Katie. “Neither one of us knew what to say to each other, so we just pretended it wasn’t there.”
Katie felt helpless. She knew Kristen wanted to pretend like her disease didn’t exist, so it was a subject that was never spoken about.
High school can be miserable enough, but for someone with a debilitating illness, it’s even worse.
“It’s really hard to describe the fatigue that comes with an autoimmune disease. I would sleep for 18 hours and still wake up so exhausted,” Kristen said.
“HOME WAS REALLY DIFFICULT FOR A REALLY LONG TIME.”
Home was a constant reminder to Kristen how long she suffered in silence before the diagnosis. Kristen’s mom feels though she failed her daughter for not connecting the dots sooner.
“I rationalized every symptom. Kids don’t get chronic illnesses. The pediatric nurse in me knew better, but I just didn’t see it in my own daughter,” Kathleen said.
Kathleen said her daughter’s rheumatologist was suspicious that Kristen, now a high-school senior, might be depressed about her diagnosis. During one of the many appointments, Dr. Nickeson informed the two that Kristen qualified for Make-A-Wish. Back in Michigan, Kathleen had worked with the organization to help children's wishes come true. It was bittersweet for her to hear her child qualified for Make-A-Wish.
“Not exactly a goal of any parent, but the focus was on Kristen,” Kathleen said.
After the appointment, mother and daughter sat down for lunch at Applebee’s and talked about her wish.
Soon after and with her wish in the works, Kristen graduated magna cum laude at her high school and accepted a full-ride scholarship to Florida International University in Miami.
“I REALLY WANTED TO SWIM IN THE GREAT BARRIER REEF, THAT’S WHY I CHOSE AUSTRALIA.”
The trip started off a little rough. Ed, Kristen and Katie’s father, Kathleen and the two girls were picked up by a limo sent by Make-A-Wish and were brought to the Tampa airport. They waited at the Tampa airport for their first connecting flight to LAX, which was delayed several hours. At LAX, they ran to their terminal only to find out that Virgin Australia had sold their seats to people on standby. The Boyd’s were put up in a hotel for the night and returned the next day with the assumption that they would finally make it to Australia.
They were told by the terminal attendant that they might get tickets on the next flight. Nothing was guaranteed. Kathleen called the organization and got everything straightened out. Soon they were on a flight to New Zealand.
“Air New Zealand was so good to us. They gave us basically anything we wanted,” Kristen said.
They flew from New Zealand to Sydney then from Sydney to Cairns. When they arrived in Cairns, they were greeted with a welcome booklet about Australia.
First, they visited the Great Barrier Reef which is located off the coast of Cairns. Kristen was able to the see the reef before scientists declared many parts of the reef dead due to coral bleaching.
The next day, they arrived at the Cairns Tropical Zoo as soon as it opened. The family was able to feed kangaroos and wallabies before the koala experience opened. This is what Kristen was most excited for. At the koala experience, guests can hold and cuddle with a koala, which is illegal in certain provinces of Australia.
“I was under the impression the encounter was just going to be me holding a koala, but I also got to hold a snake, a baby crocodile and hung out with a wombat,” Kristen said.
The family traveled from Cairns to Sydney and took a trip to the Sydney Harbour Bridge, of which you can climb and see every inch of the harbour. Make-A-Wish supplied them with all the photos from the climb.
Although the trip started off hectic, Kristen was able to do all the fun excursions that were originally planned.
“I HAVE HAD MUCH BETTER EXPERIENCES IN COLLEGE.”
Kristen describes her first few weeks of college as a whirlwind. She focused on making friends and learning the lay of the land.
She still has chronic pain and has struggled with a rash on her face for years, but more recently she’s dealt with hair loss. Over the years, she has learned how to cover the rash with makeup, but dealing with hair loss has been much more difficult on her.
“It’s slowly growing back, but it will never be as full as it was.”
The steroids she takes regularly makes her gain weight as well, but Kristen goes to the gym every day and has been seeing results.
She has thrived in college and is no longer afraid to tell people about her disease like she was in high school. She attributes her change of heart simply to getting older and learning to love herself.
Her professors are aware of her disease as well. She is a part of the Disability Resource Center at FIU where she learned to have open communication with her professors and others about her struggles.
“Eventually, I accepted that there was nothing I could do to change the diagnosis and that if my friends didn’t like me because they saw the rash, well then they weren’t really my friends,” Kristen said.
Kristen went from failing a class in high school to graduating cum laude with two majors (Environmental Studies and Interdisciplinary Studies) and a minor (Biology) from Florida International University in Miami. She plans to pursue a Ph.D. in Environmental Statistics in the fall of 2019.
