Can there be any disease as grueling and, often, mysterious as lupus?
Certainly not for Jan Jundt, 2014 ambassador for Lupus Foundation of Minnesota, who was diagnosed in 1989. “I thought at the time that it was arthritis,” Jan says. “I was having trouble getting my hands open, and walking stairs. I was really afraid it was arthritis – my family has a long history of arthritis.”
Back then it was very common even for doctors to diagnose lupus as something else, she says, and not just in her home town of Bismarck, North Dakota. “For years lupus was misdiagnosed completely,” says Jan, on the eve of the foundation’s 17th annual Lupus Walk for Hope and 5K Trail Run – Twin Cities.
Jan is married; her husband Dave recently retired from the North Dakota National Guard. Last spring the couple moved to Fargo, ND from Bismarck to be closer to their three grown daughters.
Also: 25 years ago, lupus nearly killed her.
“I thought it was arthritis,” Jan relates. “In a visit to my allergist he said: ‘go see a rheumatologist.’ The look on his face was, ‘you do it now.’” She got an appointment the following week – a miracle in itself. After tests were run, her rheumatologist called to say she had lupus and wanted to visit with her and her husband. She scheduled a follow-up at the end of the next week.
“And I didn’t make that appointment,” Jan says. “The night before, I crashed. I had complete renal failure. Basically the only things functioning were my heart and my brain. They gave me 24 hours to live.
I don’t remember the next 10 days, and my husband says well, that’s a blessing. You don’t want to know.”
Another time, much more recently, she had another scare. “I had come down with pneumonia. I just thought it was my allergies, and my asthma. We were driving to Minneapolis and I collapsed. That’s the lupus; if you have a weakness in one spot, it just goes for it.”
What’s most striking about this is her positive, enthusiastic tone, even when the subject turns dark. How can you ensure that these frightening episodes do not happen? “You can’t,” she says.
What is Lupus?
If anything about lupus can be simple, here’s the simplest explanation – lupus causes the immune system to malfunction. It mistakenly starts creating auto-antibodies that normally guard the body against bacteria and viruses. Instead, they attack and destroy healthy tissue. This can result in a very wide range of symptoms – pain at the joints, fever, fatigue, headaches and sensitivity to the sun among them.
Like most other people, Jan knew none of this. Following her first harrowing episode, she started researching the disease.
“I could not get any information about lupus,” she says. “Every place I called, I was finding dead ends.”
The one certainty: there were lots of others suffering from lupus, and they likely had no place to go either.
The Support Group
Jan and her husband started a lupus support group 24 years ago in Bismarck, ND. She found a catalyst for it in the Lupus Foundation of Minnesota, which provided the help needed to start the support group.
The group meets the second Thursday of every month. There are about 15 people in the group, Jan says, with a core of about a half dozen. The group first met at night, but switched to mid-days after fatigue became a problem. There are also frequent transportation issues in a community with lots of rural areas; “the community has been very good to us,” she says. “They help whenever they can.”
Still, the resource has become irreplaceable. “I have learned the most from those who have lupus,” says Jan. “People come for different reasons. “Some people come when they’re not feeling good, and need some support. Others come when they are feeling good, and just want to be around people.”
Since her move to Fargo, North Dakota last May, Jan can no longer attend the group she started. But it’s still going strong. On Saturday, September 13, she walked along with Coolibar team members as the official ambassador for Lupus Foundation of Minnesota in the Lupus Walk for Hope and 5K Trail Run – Twin Cities.
“Our goal is to help one person,” she says. “If we can do that, we’ve done our job.”
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