Parents head to DC to draw attention to child's rare disease

Photo by Brian Giandelone

Photo by Brian Giandelone

SUWANEE — College life has been a hard transition for Casey Klepchick.

Rites of passage like late night cramming sessions don't come easy when you have to take a sleeping pill and aren't likely to retain last-minute study sessions.

Klepchick, a Wesleyan high school graduate in her sophomore year at Auburn University, has a disease that few people know about.

Interstitial Cystitis is so rare that it took doctors 10 years to diagnose her after her symptoms began appearing at age 5.

And now that she is finally managing the disease with diet, medicine and procedures, she wants to ensure that others are able to find out about it.

Klepchick and her father, Drew, are traveling to Washington today to participate in a Capitol Hill Walk on Thursday for the Interstitial Cystitis Association.

"I am not even 20 years old, I have the rest of my life ahead of me and I pray every day for a cure or solution to help me cope with this disease," Klepchick wrote in a recent school paper, explaining the pain, frequent urination and problems sleeping associated with the disease.

Drew Klepchick, who is a member of the Centers for Disease Control and Prevention Foundation board, said ICA organized the Washington trip because in times of such great financial strife, the small budget for ICA within the CDC is at risk, as well as money for research through the National Institute of Health.

"Our hope is we can create enough awareness about the importance," Drew Klepchick said.

His wife, Jessica, was more direct.

"I would like a cure," she said.

With Washington still reeling from this week's historic health care vote, Drew Klepchick said the experience should be interesting.

His own thoughts on the legislation are mixed, although he is glad to know his daughter — who has a pre-existing condition and could soon be entering a precarious job market — can be on his family insurance until the age of 26.