Benefit planned to help Wolsey family

Lunch and auction at Elks on Sept. 15

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It’s been an uphill battle since Heather Bartells of Wolsey was diagnosed with myasthenia gravis in January 2017.
“I had never actually even heard of it when they diagnosed me,” Bartells said. “It’s been a learning curve.”
Myasthenia gravis causes your immune system to attack the transmitters between the muscles and the brain that leads to varying degrees of skeletal muscle weakness. The most commonly affected muscles are those of the eye, face and swallowing.
To help the family defray ongoing medical expenses, a benefit pork loin meal and silent and live auctions are planned on Sunday, Sept. 15, at the Elks.
A freewill offering lunch will be served  during the silent auction from 11:30 a.m. to 1:30 p.m., with the live auction planned at 1:30 p.m. To donate items for the auctions, call Marilyn Eggleston at 883-4590 or 350-4085. Matching funds will be provided by Modern Woodmen — Craig Slepikas.
Bartells said her journey began when she began getting double vision and blurry vision. She saw her eye doctor and they thought a prescription change in her glasses would clear it up.
“But it changed five times in a couple of weeks,” Bartells said.
That’s when she began seeing Dr. Miner in Huron, who diagnosed the autoimmune disorder.
“For some people that’s all it stays is just optical,” she said. “Mine went into generalized myasthenia in a couple of months, affecting my legs, my arms, my speech and my respiratory system.”
There is no known cause for the disorder, which is generally found in more women than men, and generally for those over 40. Bartells said she was 44 when she was diagnosed.
“Right now I’m doing really well, but there are times that I’m not,” she said. “It’s nothing for me to be in the hospital for a week at a time for different treatments, and undergo occupational and physical therapy to get me going again.”

There is no known cure, but medical science has undergone advancements in treating the condition. If it’s caught in time, it’s possible to slow the progression of the disorder into other areas of the body.
“I’ve done plasma exchange, essentially they remove the blood from your body and run it through something that separates those antibodies causing a problem for my blood and putting my blood back in,” Bartells said. “That works great, but it works for only a short amount of time. I’ve done several cycles of that, but it’s not a good long-term solution.
“Now, just cutting edge, they have a chemotherapy drug, Soliris, that works for certain types of mysasthenia,” she said. “I have a port placed and do that every week now. I’m lucky my insurance does pretty good on it, it’s one of the most expensive drugs on the market that’s an FDA approved treatment for certain types of myasthenia gravis.”
Soliris is administered via IV and most of the time she needs to go to Sioux Falls for the weekly treatments. Because it suppresses her immune system, they don’t want her admitted to the hospital for fear of infections.
“Then we go to a hotel,” Bartells said. “We’re looking at hotel costs or diving back and forth every day, and then, of course, being off work all the time. They figure this will be a lifelong treatment that I’ll go through.”
She also takes steroids and other drug combinations in an attempt to slow the progression of the disorder.
“Once Soliris starts working they can get me off some of these other drugs, that is the goal, anyway,” she said “They call it the snowflake disease because every single person is different. For some people it’s really manageable with oral meds, others it takes forever to get the right meds, that’s where I’m at.”
Although her condition was diagnosed after she began having trouble with her vision, Bartells said she may have started having symptoms about eight years ago.
“I had stomach issues, it would empty too fast or too slow,” Bartells said. “We worked with Mayo Clinic and we literally could not figure out what was going on. We talked about a colostomy bag. I asked are you sure this is going to work and they couldn’t promise me, so I wasn’t willing to do that if it wouldn’t help.
“We feel that was a trigger way back then that something was going on,” she said. “Once I was diagnosed with this and started medicine, those muscles started working in my stomach.”
Bartells has two part-time bookkeeping jobs, one at Prairie Smiles Family Dentistry and one at Huron Welding. Her husband, Chad, is employed at Agtegra.
“They let me come and go as needed — they’re so supportive,” Bartells said. “If I’m doing really good I maybe get 24 to 32 hours a week. The month of June I didn’t work at all. It depends on where I’m at.”
They have three children, Chase who is 19 and in Spearfish, Cadden a junior at Wolsey-Wessington School, and Greyson, a third grader at WW.
“It’s very hard, I have to miss a lot of their activities,” she said. “We’re lucky to have family and friends that help with that when I’m not able to. The school is very supportive helping the kids through it.”
Bartells said she is involved in several online support groups and everyone has a different tale.
“That’s been very beneficial for my husband,” she said. “If you don’t have the illness it’s hard to understand what your spouse is going through. He gets information from other spouses or caregivers and reads what they’re saying. It makes it easier for him.
“Unfortunately, people are dying from it,” she said. “It hits the respiratory system, plus the side effects from medicine can cause issues. It’s so hard to treat because everybody is different.”
Their family, friends and the church family at United Methodist Church in Virgil have been steady rocks of support for the family. People have offered to clean house, bring frozen meals that are easy to pop in the oven, or just stop by to see if they need anything.
“I just wake up every day grateful that I’m feeling good,” Bartells said. “The doctors never want to promise anything because they really don’t know.”