- Associated Press - Monday, April 4, 2016

BISMARCK, N.D. (AP) - To her peers in school, Sophee Poppe doesn’t appear to be sick.

She sings in a vocal ensemble at Legacy High School in Bismarck and plays the baritone sax in the school band. She’s also a self-taught guitarist and ukulele player.

But Sophee, 15, is battling an unknown autoimmune disease that has some doctors baffled, the Bismarck Tribune (https://bit.ly/1SwWnfC ) reported. In essence, the disease is causing her body to attack itself. Sophee says the disease makes her feel weak some days, even unable to walk, but other days she’s just fine. She takes narcotics, sometimes daily, to deal with the pain.

“That’s one thing that’s been kind of irritating with coming back to school is that it seems like I’m perfectly fine but little do people know I could actually be in a lot of pain,” said Sophee, who returned to her regular 10th-grade classes earlier this month.

“You’d see her in the hospital bed, and she looks completely healthy,” her mother Kara Poppe said.

Sophee has been in and out of the emergency room several times since symptoms of disease started in December, but doctors can’t seem to pinpoint a diagnosis. A doctor she’s been seeing at Sanford Health had no answers and recommended Sophee be sent to a team of doctors at Mayo Clinic in Rochester, Minnesota.

“This is the worst case I’ve ever seen of it,” said Dr. Megan Miller, a physician at Sanford who has seen Sophee ever since the autoimmune disease breakout.

Miller said the disease waxes and wanes for Sophee. There’ll be a couple weeks where things get better, then she gets sick, something will trigger an immune reaction, and she’ll get worse.

The case is very severe, Miller said. An example of a fairly common autoimmune disease is rheumatoid arthritis, she said.

Miller said she’s the go-to source for doctors at Mayo, and she’s been conferring back and forth with them to devise a plan.

“Even Mayo says this is the worst case they’ve ever seen,” Miller said. “They’re kind of throwing everything they have at her.”

Doctors ran tests on Sophee and monitored her immunoglobulins, or antibodies, in her blood, which were going up and down, Kara Poppe said, indicative of an autoimmune disease.

“That’s our diagnosis right now because it’s kind of a diagnosis of exclusion,” Miller said. “We’ve done every diagnosis under the sun, and nothing is left.”

On Jan. 16, the disease got progressively worse and Sophee, who was on several pain medications, antibiotics, antivirals and in need of a constant IV, had to be transported by ambulance to Mayo.

“It happened so quickly,” Kara Poppe said.

Doctors at Mayo are still struggling with a diagnosis, Miller and Kara Poppe said.

Sophee was recently placed on immunomodulators to help regulate her immune system and possibly weaken it.

Sophee said what scares her most is not knowing when the disease will flare-up or get worse.

“This may go dormant now for a while and sit and all of a sudden two, three years down the road it could flare up again,” Kara Poppe said. “Or it could flare up again tomorrow.”

“We’ve kind of been on this roller-coaster ride,” Kara Poppe said. “They don’t know what she has. They haven’t seen anything like it.”

To keep up with Sophee’s mounting medical expenses, including a hefty bill from her ambulance ride to Rochester, Kara Poppe started a GoFundMe page. She also started knitting scarves, called “Sophee Scarves,” for each $50 donation.

Kara Poppe said she’s received an outpouring of community support, including from her son Nelson’s hockey team. As of last Wednesday, her daughter’s GoFundMe page had garnered nearly $8,000 in donations.


Information from: Bismarck Tribune, https://www.bismarcktribune.com

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