SWEA CITY, Iowa - "MS is a bizarre disease," admits Julie Hansen, who was diagnosed with multiple sclerosis 17 years ago. "It hits everybody differently, and it's tough to find ... someone who's been through it too."
Hansen, of Swea City, and friend Sara Winkelman, are starting the support group after Winkelman was diagnosed with Multiple Sclerosis late last year.
"We've been trained by the National MS Society, because there is nothing in the line of support groups in our area of Iowa. The closest ones are in Mason City or Fort Dodge, and one in Mankato" Hansen said.
Sara Winkelman, left, and Julie Hansen, with unofficial mascot Diesel, are starting a MS support group for the region called the MS Warriors. The support group kicks off Friday with an evening picnic at Smith Lake, north of Algona.
The group will travel once it's established, going where members are located.
"We realize that with MS, mobility is a big issue," she said. "The national society is there to help us with information. ... We're trying to be the voice out there and provide a place for people to go."
Multiple Sclerosis is a progressive autoimmune disorder that targets the coating on nerve cells.
"It's your own immune system attacking you," Hansen said.
The attack damages nerve cells and causes diminished function in the brain and spinal column. Common symptoms are trouble with mobility and balance; cognitive impairment, or "foggy brain;" and blurred vision, or optic neuritis. MS affects more women than men, with MS showing up in women shortly after giving birth.
Hansen was diagnosed in 1998, three years after her last child was born. But she admits she was in denial for the first few years.
"That is the scary thing about multiple sclerosis," she said. "You look fine just like everyone else, so it is easy to deny anything as nasty as MS is lurking underneath the surface eating away at your nervous system."
Hansen was forced to recognize her MS several years later when she lost her vision due to optic neuritis, and she was hospitalized for several days with intense steroid treatments.
"I was lucky; the treatment worked, and I got my vision back," she said.
It also got her out of denial, and she began taking medication injections for MS three times a week, which has lengthened the time between episodes.
As for Winkelman, her MS rapidly took over her life starting Labor Day weekend when her fingers and toes swelled up. A few days later, she became so weak she couldn't open a water bottle or cut up her children's food. The blood tests showed nothing. A month later, she couldn't keep her balance and lost vision in her right eye. She also couldn't remember anything her husband would tell her. A brain scan gave doctors the conclusion of either MS or an inoperable brain tumor.
"I would never wish MS on anyone," Hansen said. "But you can work with MS. It does shorten your life span, but it's more of a chronic disease."
A spinal tap and an MRI confirmed for Winkelman it was MS.
From there, Winkelman began working with Hansen on a MS support group. In May, they participated in a MS walk in Mason City, along with nearly a dozen other people on their team.
"We call ourselves the MS Warriors," Hansen said. "We ended up being the largest team. ... This seems to be a natural fit for Sara; she did an excellent job fundraising."
The support group kicks off with a picnic at 6 p.m. Friday at Smith Lake, located north of Algona. Burgers, beverages and utensils will be provided, and people can bring salads or desserts. More information on the MS Warriors group can be found by contacting Hansen at (515) 272-4876 or Winkelman at (712) 209-0270. There is also a MS Warriors page on Facebook.