|
Posted: 5:57 PM Mar 23, 2010
Parents head to DC to draw attention to child’s rare disease
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.
Reporter: Camie Young, Senior WriterEmail Address: camie.young@gwinnettdailypost.com |
|
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.
Latest Comments
Dee, Dana, and Shirley, I am so sorry I am just now responding to your posts. I have just become aware of them. I am the mother of Casey, the college student that has had IC symptoms since age 5. I am so sorry that you have all struggled with IC for so long, and I look forward to Casey reading your posts. Dee, I haven't heard anyone say before that it runs in the family. That is very interesting. Dana, I will be contacting you to find out more about the medicine that helped for you. I believe the more we read and talk to others, the better our chances are of finding a treatment that works. Thank you all for posting. Jessica
I also have had IC since I was a little girl. My mother started taking me from Dr. to Dr. until we ran out of them when I was in Jr. High school. I am now going to be 60yrs old. I have attended college, married & raised 3 sons. I now have 8 grand children. My sister has Ic although her symptoms did not start until after high school. She also has attended college & married & raised 2 daughters. It has not been easy. We both have severe IC plus many of the other chronic health problems that go along w/IC. We went through our state rehab to help us w/college and jobs. I am so glad & thankful for people like you who are advocates for those who have no voice for whatever reason.Some w/IC cannot travel because of their IC limitations, cannot afford to go due to medical bills, or have just given up. Seeing you do something like this gives many IC patients hope. thank you from our family. We have 6 family members diagnosed w/IC & on of my gran-daughter has IC symptoms.
I'm so glad the Klepchicks are taking the time to focus attention at the national level about Interstitial Cystitis. I had suffered from it and took 6 years to be diagnosed. Like Ms. Klepchick, I was attending school (and working) which can be a significant challenge when you are dealing with urinary symptoms and chronic pain. However, I no longer suffer from IC. I took meds, modified my diet and made some lifestyle changes, which definitely helped, but what faciliated profound healing was learning a form of energy healing called Reiki. I am in the Atlanta area and would be happy to speak with the Klepchicks if they are interested in learning more. Everyone's response to Reiki is different, but many people report at least some relief from pain, discomfort and anxiety. This is my story if anyone is interested: http://dragonflyreiki.net/2010/02/reiki-and-interstitial-cystitis-my-healing-story/


