National Myositis Day recognized in Milwaukee
Chances are, you've never heard of Myositis. Only 50,000 people in the United States have this disease -- which is diagnosed when the immune system inflames the body's healthy muscle tissue -- and because of the low number of people it affects compared to other diseases, myositis is under-researched.
Kris Lane Barger was diagnosed with myositis in 2006 and struggles with muscle weakness and fatigue almost every day of her life.
"Once receiving the diagnosis it's terrifying," says Barger. "There is no cure and funds for research are extremely and disturbingly limited. My disease has been at a continuous simmer that result in good days and some not so good days."
Monday, Sept. 21 is National Myositis Awareness Day, and Barger coordinates the national day of recognition with her personal efforts to raise funds for the disease. Last year, she raised $2,434 for myositis research and she hopes to get at least $3,000 this year.
At some point, those suffering from the disease might rally and organize an event to further their message, but for now, raising awareness via the Internet is the groups' first step.
"There isn't an event, per say, but the national day of recognition does offer the opportunity to help publicize this disease, a key step in the search for better treatment and research into a cure," says Barger.
Barger, who is the mother of two school-aged children, says she tries to believe she got myositis for a reason.
"It has taken a while, but I try to look at what my disease has given me versus what it has taken away," she says.
Barger believes that getting the word out there and making people aware of myositis will increase her chances of meeting someone or inspiring someone to help with her cause.
"Perhaps through me, my experience and my willingness to share, someone else will be diagnosed," says Barger.
Barger says it took a long time for doctors to diagnose her illness, but in June 2006, after a muscle biopsy, she was finally told that she has a rare muscle disease called dermatomyositis, which is in the myositis family. Doctors told Barger that the best case scenario would be if the disease went into remission within six months, but three years have passed and Barger remains afflicted.
The worst part of the disease for Barger is that it affects her ability to work and to care for her children. Barger is a manager at PyraMax Bank and she says her employer has been very supportive. However, it's more difficult for her to deal with the illness as a mother.
"I am sure my children would love it if I had the energy to play kickball in the backyard or go for a bike ride. I am sure they don't enjoy seeing me in bed when they would like me to be making them breakfast or getting them on the school bus," she says.
"However, I hope that through my example my children will learn that life will throw some things at them that they don't want, don't understand and don't deserve, but regardless, it is there for a purpose."
I have only heard of this because of the Seinfeld episode.
1 comment about this article.
Post a comment / write a review.
Disclaimer: Please note that Facebook comments are posted through Facebook and cannot be approved, edited or declined by OnMilwaukee.com. The opinions expressed in Facebook comments do not necessarily reflect those of OnMilwaukee.com or its staff.