April 2, 2007
Son of Winsted native diagnosed with rare disease
By Linda Scherer
Last fall, Ben Fiecke, 17, was looking forward to his high school senior year and graduation. That all changed in December when he was diagnosed with Dermatomyositis (DM), a rare disease.
Ben’s parents both live in Toledo, Wash. where he was born. His father is John Fiecke, a native of Winsted and a 1980 Holy Trinity graduate. His mother is Gail Wuollet, a native of Cokato, who attended Dassel Cokato High School.
It was very difficult for Ben’s parents to believe it when the doctors first told them Ben had DM.
The rare disease is characterized by muscle weakness, pain, fatigue and a distinctive skin rash. DM is not curable, but is treatable.
Before Ben started to experience symptoms of DM, he was extremely athletic. He played football, basketball, and soccer, wrestled and worked out with weights regularly, according to Wuollet.
Ben’s illness began the end of October, when he was first diagnosed with mono. He felt sick, weak, and had no energy. He was also experiencing nausea, and had ulcers in his mouth, Wuollet recalled.
By the end of November doctors started thinking it was more than mono. By then his blood work showed that his muscle enzyme was high and his liver was inflamed.
He started experiencing swelling in his arms from the elbows to the wrists, he had difficulty swallowing, and his eyesight was affected because of the swelling behind his eyes, Wuollet said.
Referred to the Seattle Children’s Hospital, Ben was hospitalized the beginning of December, and diagnosed with DM. His case was considered a very serious case. Normal muscle enzyme is one to 300. Ben’s was 17,000, according to Wuollet.
A feeding tube was needed because of the difficulty Ben had swallowing. His stay in the hospital lasted until the end of December and, when he was able to return home, it was with the feeding tube because he was still encountering some trouble swallowing.
While Ben’s prognosis is good, he is still making monthly visits to Seattle Children’s Hospital.
Ben is being treated with steroids. When improvement of muscle strength is achieved, the medication is slowly tapered.
According to Wuollett, it is estimated that Ben will be on medication for approximately two years.
DM usually affects adults between the ages of 40 and 60, or children from five to 15 years old. It affects women much more often than men. There are approximately 20,000 people in the U.S. with DM.
The disease is believed to be an autoimmune disease, caused by an immune response.
The body’s immune system usually fights infection. When the immune system attacks the body’s own tissue, it is called an autoimmune disease.
An example is the immune system attacking muscles, causing them to become weak.
DM does not spread from person to person. The disease is not directly inherited.
Ben has been attending school part time since his feeding tube was removed. The occasional half days of school still make him very tired.
His eyesight has improved, but his left eye still sees spots, which interferes with his vision. The family is aware that his left eye might not get any better.
He is doing mild stretching exercises daily as part of a physical therapy plan.
The hardest part of the recovery period for Ben is knowing that he will probably not be able to graduate with his senior class at Toledo High School. A class of just 60 students, Ben will definitely be missed.
“This is really tough for all of us,” Wuollet said. “It is a battle every day.”
Wuollet would like to get Ben into a support group, but Ben is one of the few his age and sex with the disease. “It is mostly girls that get this disease, and it is very rare to get this at his age,” Wuollet said.
His major support group is his family. Besides his parents, Ben has two older sisters, Toni and Kelly. He also has one younger brother, Mitchell, who is 16.
He has an extended support group in Minnesota with his grandparents, Alphonse and Rose Fiecke who live in Winsted and Donald and Eva Wuollet who live in Cokato.