Extreme sun triggered disease
It was 10 years ago but seems like yesterday, said the man, who asked to be known only as Mark.
After spending a few months in late 2008 cutting firewood along a creek southeast of Hillsboro, he began to develop a skin rash.
At first, it showed up on his wrists and around his eyes and forehead.
“I just thought it was poison ivy or something,” he said.
The following spring, the 50-year-old Hillsboro resident worked on a hot roof without a shirt or sunscreen, burning his face and chest. He developed a “shawl” rash, he said, on his upper torso and a rash around his eyes. It reddened his entire body.
He was having difficulty raising his arms above his shoulders when the farmer for whom he was cutting trees said his neighbor had been having weakness and had been diagnosed with dermatomyositis, a rare autoimmune disease that causes inflammation and deterioration of skin and muscle tissue.
The symptoms seemed to fit perfectly, so Mark went to a dermatologist, who diagnosed him with the same disease, which can be triggered by sun exposure. By that time, Mark had lost more than 80 percent of his strength, had lost 20 pounds, and was barely able to walk.
He had frequent falls and couldn’t get up unless he had something to crawl up on. Two times, after he had lain on his porch for a while, neighbors heard him yelling and had helped him.
Despite two hospital stays, one in October and one in November 2009, his symptoms worsened. He was barely able to walk. Because he couldn’t get up from a sitting position, he bought a lift chair.
He couldn’t walk up steps or lift his foot more than two inches. His arms became so weak that he couldn’t lift them high enough to comb or wash his hair and barely high enough to eat and brush his teeth. For eight months, he couldn’t drive.
Neighbors, relatives, and friends helped him get through that difficult time, Mark said.
Doctors finally figured out how to get the disease under control. Now, Mark goes to St. Luke Hospital in Marion every month for an intravenous autoimmune suppressant treatment.
He can walk again, doesn’t need his lift chair, and can raise his arms above his shoulders. He uses reach sticks to pick up things from the floor and can drive two or three miles at a time in the immediate area.
When he goes outside, he wears special clothing that has a sun protective factor of 100 to protect him from ultraviolet rays.
In his house, he has replaced all the fluorescent bulbs with regular or LED bulbs. He uses a laundry additive that increases SPF.
“The first three years, you have the best chance of getting cancer,” Mark said. “I’m in my ninth year, so I’ve crossed that hurdle.”
On top of his autoimmune disease, Mark also deals with spinal stenosis. A fall in 1990 left him with bulging discs and pinched nerves.
“I’m trying to avoid surgery, I’ve gotten shots, but they haven’t done much good,” he said.
Three years ago, he found a support group in Wichita that meets monthly.
“The support group is helpful. Most doctors don’t know much about my disease. We can talk about medicines and treatments and the things that help us,” he said.
Before he became disabled, Mark worked as a mapper. He spent a year in the county appraiser’s office in 1987, when computer mapping was being introduced.
He mapped for planning and zoning in the Kansas City area and Sprint at determining locations of cell towers in Kansas City and Wichita areas.
Mark moved back to his hometown of Hillsboro in 1997 at age 37 to care for his parents until their deaths.
During that time, he worked at a McPherson refinery, mapping pipelines within the refinery.
Now 58, Mark has adjusted to his new life. Because of his bad back, he sits 95 percent of the time but tries to maintain a good attitude.
“You’ve got to play the cards you’re dealt,” he said. “I can’t complain. It could be worse. I still can walk. I don’t need a wheelchair. I’m not blind.”