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Bloomfield college student coping with chronic disease with positive attitude; participating in Lupus Walk on Saturday

Thursday, September 27, 2012

(Photo)
Olivia "Liv" Severyn (right) and her mother, Robin Hostettler. Olivia suffers from lupus and will participate in the Walk for Lupus Now of Central Indiana at Fort Harrison State Park at Indianapolis on Saturday.
(Submitted photo)
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

http://walkforlupusnowci.kintera.org/


Comments
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My mother had it she had it for 25 years hurting everyday some days she couldnt even get out of bed but she made it through finally her heart gave out at 62 so I know what your going through best wishes to you hang in there.

-- Posted by switzgirl9 on Thu, Sep 27, 2012, at 3:23 PM

My daughter and I both have ITP which is an autoimmune disease caused by low platelets. Now she has been diagnosed with lupus also.Usually if you have one autoimmune disease, more will follow

-- Posted by meromite on Thu, Sep 27, 2012, at 3:48 PM

Olivia, you are an inspiration to people living with lupus and those struggling with any chronic disease! We hear so many stories about diagnosis taking years and fund research to find biomarkers that can identify the disease more quickly.

Liv Happy is the perfect name for your team! Good luck with the walk. We'll be cheering you on in spirit!

S.L.E. Lupus Foundation

-- Posted by SLE Lupus Foundation on Thu, Sep 27, 2012, at 4:45 PM

Have to admire Olivia's attitude.

-- Posted by ellis1 on Thu, Sep 27, 2012, at 10:20 PM

As someone who had symptoms of Lupus starting at 2 and, finally, a diagnosis at 17, I can empathize with Liv. Going through high school and college was not easy being so sick. Having doctors who have no idea what Lupus is is even worse than all of that, though. It's hard enough when friends and family don't understand, but when doctors don't know anything about the disease, it can have a big impact. I even began to wonder if I was imagining everything and being pacified by the doctor who finally diagnosed me (perhaps the disease was made up). It's so good to see the amount of awareness that's come to light since I was a freshman in college in 1996. I hope that research and awareness can take us even further in the years to come.

-- Posted by bencao on Fri, Sep 28, 2012, at 11:04 AM

Hi. The article has the Antiphospholipid Antibody Syndrome (APS), spelled very wrong.

About 50% of Lupus patients also have APS. Our Founder has both Lupus and APS as well. Most of our Board of Directors do as well.

We wish you well Liv and stay away from those finger stick machines for your INR. They are NOT accurate in APS patients. Citations: http://www.apsfa.org/links/links22.htm

Who the APSFA is: Founded in 2005, the APS Foundation of America, Inc. is the leading United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, young strokes and heart attacks. We are a volunteer run, community based 501(c)3 non-profit Public Charity organization and is dedicated to fostering and facilitating joint efforts in the areas of education, support, public awareness, research and patient services. The APSFA's Medical Advisory Team includes nationally & internationally recognized experts on Antiphospholipid Antibody Syndrome. Our URL is http://www.apsfa.org

-- Posted by APSFA on Wed, Nov 21, 2012, at 11:13 AM


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