Bloomfield college student coping with chronic disease with positive attitude; participating in Lupus Walk on Saturday
At age 21, Olivia "Liv" Severyn, of Bloomfield, is living with a potentially live-threatening autoimmune disease called systemic lupus.
Lupus is a chronic disease that can cause damage to virtually any organ in the body, especially the skin, joints, blood, and kidneys.
However, lupus is many cases is very difficult to diagnose and even tougher to treat.
There are times of remission and times of flare-ups and there are bad days when you can't grip a cover or get out of bed.
"The hard part about lupus is you don't look sick," Olivia commented in a telephone interview.
There are more than 1.5 million people in the U.S. living with lupus.
More than half of the people with lupus suffer four or more years and visit three or more doctors before receiving a correct diagnosis.
Late diagnosis and delayed treatment contribute to significant tissue damage leading to organ failure, disability, and death, according to information from the Lupus Foundation of Indiana.
"Even doctors don't understand that you don't feel well," Olivia said.
Olivia got worse when she was about 13.
"I was just in pain ..." she recalls.
Olivia, a senior at Indiana University's Bloomington campus majoring in recreation therapy, was actually diagnosed when she was 14, according to her mother, Robin Hostettler.
"Lupus has manifest in her body as a blood clotting disorder, skin and joint flare-ups as well as kidney disease for which she received chemo therapy last year," her mother explained. "This disease changed our lives. We were told that puberty probably triggered the disease in Olivia. Believe me, I held my breath when my youngest daughter (Tori) turned 13."
On Saturday, Olivia and about 25 of her friends, fellow college students and family members will be participating in the annual Walk for Lupus Now of Central Indiana at Fort Harrison State Park at Indianapolis.
Her team, called "Liv Happy," will participate in the half-day of fun, food, and friendship.
Walkers can enjoy either of Fort Harrison's 1 or 3 mile walk routes.
Registration begins at 9:30 a.m., with the walk starting at 11 a.m.
Olivia's medical problems started after her family moved from Indiana to Colorado for about 10 years.
When Olivia was 13 and in the seventh grade she started "bleeding out" as her mother described it.
"She started getting sick ... (doctors) ruled out leukemia. She bled for about a year and we started doing treatments. She bled from her mouth ... everywhere. She had no platelets. They ended taking her spleen out. Once they took her spleen out she starting throwing blood clots, so it did the exact opposite. Then more symptoms started occurring and she ended up being diagnosed with systemic lupus with a blood disorder called antithospholipidemia syndrome."
In Olivia's words she was entering a scary place of uncertainty.
"I didn't know what to expect because Lupus is one of those things that's different for everybody," she commented.
Olivia went into remission for a few years and then started to go into kidney failure at 18.
The family moved back to Indiana in 2009 to be close to family during her sickness.
She was in the beginning stages of kidney failure and she started losing her hair because of the Lupus.
Olivia was then started on chemotherapy for about six months. She lost the rest of her hair, but the treatment slowed her kidney failure.
"Part of her Lupus, when she has a flare-up is she has blisters all over her body. At 18 years old, I had to help her get dressed. She couldn't go up and down steps or anything," Hostettler said. "The good news is she got through all of that. She is running and everything now. I think the message here is Olivia just continues and she is an inspiration. There are times when we thought we were going to lose her. This summer she ended up with appendicitis and because of her blood clotting disorder, for about 24 hours, we didn't know what was going to happen."
Olivia said the toughest obstacle for her was losing her hair.
"An 18-year-old never wants to lose their hair," she said.
Hostettler said the strong faith and advice given to her daughter by her minister Dad, the Rev. Billy Ed Hostettler, when Olivia was about 14 has been a big factor in her day-to-day living with the disease.
Olivia is a busy college student and trying to keep a positive outlook on things.
She's intent on following the advice of her late grandfather, who was a well-known Greene County minister, who died in August 2009.
Billy Ed shared some encouraging words with his granddaughter when she was first getting sick.
He advised, "For every problem under the sun, there is an answer or there is none. If there be one, then search til you find it. If there is non, then never mind it."
Olivia went on to say, "I live that every single day of my life and don't worry about things I can't fix. I don't let it (Lupus) stop me from doing anything."
She remains optimistic about her future.
"It's kind of been a long road. It's just one of those things, I guess."
With her college degree in recreation therapy, Olivia wants to help children with chronic diseases, and give them hope.
Anyone who wants to donate to the "Liv Happy" team can go the following link online at