Running for Lupus: Two local teens battling the incurable disease
Calista Soeby and Kara Berg want everyone to know what living with the incurable disease lupus is like.
Soeby, 15, West Fargo, and Berg, 11, Fargo, will be running in the Fargo Marathon's 5K race on Friday to help bring awareness to lupus. So far, about 40 people have signed up to join them. All will be wearing bright blue T-shirts with a purple ribbon draped across a pink heart.
Lupus is an inflammatory disease that occurs when the body's immune system attacks tissues and organs, potentially affecting joints, skin, kidneys, blood cells, brain, heart and lungs. The most distinctive sign is a facial rash that resembles the wings of a butterfly unfolding across both cheeks, occurring in many but not all cases. While there's no cure for lupus, treatments can help control symptoms, according to a Mayo Clinic website.
Soeby, a freshman at West Fargo's Sheyenne High School, started feeling tired and weak in fourth grade. Then, her face began to swell.
"They told us she was having allergic reactions to something," said her mother, Maria Soeby.
The condition continued into fifth grade.
On Nov. 3, 2011, Calista was diagnosed with lupus at Gillette Hospital in St. Paul.
"I remember that day very well," said her mother. "After that, the lupus attacked her kidneys. She was swollen everywhere, mainly on her face. She couldn't walk, she was in so much pain."
Days later, a Nov. 11 kidney biopsy showed that Calista had severe scarring on both kidneys caused by lupus, her mother said.
Berg was diagnosed with lupus last year.
"She had the signature butterfly rash on her face that would not go away," said her mother, Marea Berg.
Initially, Kara didn't experience fatigue. She's been a gymnast since she was 3 years old. "She never complained about muscle soreness or fatigue," said her mother.
Kara has been on the American Gold Acro I gymnastics team for three years. She was previously on Acro II for two years and Acro Lites before that. She also plays fall volleyball.
This winter, other signs appeared. Kara began experiencing fatigue and aches from the cold weather. "We didn't experience that the whole first year," Marea said.
The Oak Grove Lutheran School seventh-grader has been doctoring with a rheumatologist at Sanford Clinic ever since.
Soeby, an avid soccer player and competitive dancer, had to drop out of both sports.
"She missed her whole sixth-grade year and was able to go back in seventh grade," Maria said.
Today, Calista is back dancing for "Just for Kix," one of her 5K run supporters along with the staff at Westside Elementary School in West Fargo, where her mother works as a reading paraprofessional.
Calista said she is now doing much better.
"I have way more strength. Before, it was just so hard to do normal things. I couldn't walk because my feet were swollen," she said. "I'm not as tired and my joints are no longer swollen."
Her dance coach, Aimee Marz, a chiropractor and co-owner of Riverview Chiropractic Clinic in Moorhead, which has sponsored her for the race, has been impressed with Calista's progress.
"She's always so dedicated and willing to work so hard," Marz said. "Even if she's in pain or not feeling well, you never know, because she pushes herself to be great. She's one of the hardest workers I've ever coached."
Both Calista and Kara are taking an anti-inflammatory drug used to treat lupus, rheumatoid arthritis and malaria.
"They will be on that the rest of their lives," said Maria Soeby.
Throughout the ordeal, Calista's mother has been working fervently to spread the word about lupus.
"People are so unaware of how serious the disease is because they look so healthy," Maria Soeby said. "I have been working with the Lupus Foundation of Minnesota to bring more programming to North Dakota. North Dakota doesn't have anything."
This will be the third year that the Soeby family has participated in the Fargo Marathon.
On Sept. 19, they will make their second appearance in the Lupus Foundation of Minnesota's Walk of Hope and 5K Run - Twin Cities in Plymouth.
Anyone wanting to join the 5K run, purchase shirts for $10, or learn more and spread the word about lupus should contact Maria Soeby at firstname.lastname@example.org
"The more the better," she said.