DOWAGIAC — As a parent of a young child dealing with a life-threatening disease such as lupus, you can only hope to provide them with the best treatment and as much support as a family can muster.

It is extremely difficult and frustrating for both the child and the parents as they first try to cope with the facts that this disease could prematurely end their child’s life.

Then there comes the frustration of watching he or she battle with the medications and the complications that come with having lupus.

My daughter Kirsten Novak, now 21, was diagnosed just before the start of her senior year at Dowagiac Union High School.

She found out that she had lupus after another doctor had discovered something strange with her blood work. She was put on an aggressive treatment for her lupus nephritis, which means it attacked her kidneys.

Due to the severity of the lupus, doctors were concerned with saving her kidneys first and then she was sent to the rheumatologist to address the lupus.

Trying to grasp all the information that was being thrown at our family, it was difficult for both myself and Kirsten to explain to others.

There were times when she felt like her classmates were avoiding her because she had this “disease” despite the fact that she could not pass it on to them.

As her parents, Carol and I tried to do the best we could to get the correct information to Dowagiac Union High School’s administration so that she could be afforded the time make up her school work because she was missing classes due to doctor’s appointments for treatments and check-ups.

In addition to the change in schedule, Kirsten had to completely change her diet. She was allowed only 2,000 grams of sodium or less per day.

It was tough at first trying to figure out how to accomplish that goal because once we started reading labels, it did not take long to realize just how much sodium is in products sold at the store. Luckily she enjoyed fresh vegetables and rice, which made up a lot of her diet in the early stages of the disease.

Kirsten takes a variety of medications to combat the disease and some of those continue to change three years later as they battle to keep the lupus under control.

One of the biggest issues she still faces is a lack of energy, which can be overwhelming at times.

“There are days I do not want to get out of bed,” Kirsten said. “I just do not have the energy.”

Kirsten also has fibromyalgia, which adds to the lack of desire to face the day, but she continues to fight it. She is attending Southwestern Michigan College and has a part-time job at Harding’s Friendly Market in Dowagiac.

My daughter told us that anger was the first emotion she felt when she got the diagnosis. She also was afraid that she might die at a young age, a fear she admits she still has to this day.

It is tough to hear your daughter tell you, “I think about dying when I have a really bad flair. I wanted to go home because the world was coming to an end.”

Her toughest adjustment was to her sleep pattern.

“You can’t sleep,” she said. “The medicine I was taking made it difficult to sleep, so when you have to get up and go to school you have no energy.”

Despite the changes in her diet, her sleeping habits and how she goes about everyday activities, Kirsten continues to try and live as normal a lifestyle as possible.

“I try to get things done earlier, take my medicine when I am supposed to and do things I enjoy doing,” she said.

For Kirsten, it is important that people know that having lupus is no longer a death sentence. If she continues to follow her doctor’s care, take the medications that are prescribed, she feels that she has a lot of years to look forward to.