Voices of IC Echo Across the Web

About 200 patients, families, friends, and healthcare providers gathered virtually for a free educational webcast held the evening of Tuesday, August 10. Panel presenters included Robert Moldwin, MD, Matt Rosenberg, MD, and patient advocates Linda Salin, Teresa McCoy, and Kevin Noa.

“The diagnostic process starts with awareness that IC is a possibility” noted Dr. Rosenberg. He emphasized the importance of raising awareness about IC among healthcare providers.

The theme of patients taking charge of their healthcare was echoed by many of the panel members. “An informed patient helps us a great deal as providers,” said Dr. Rosenberg “Patients need to be empowered and talking with the physician.” Dr. Moldwin added that you “really need to be your own advocate” and to tell your doctor if you are not getting better. Salin emphasized the need to choose a healthcare professional who is both interested in IC and interested in learning.

The panel also discussed the realities of living with a chronic condition like IC. Salin shared that it can be hard to maintain social relationships, because IC can limit your mobility and “plays on an emotional section of your brain.” It is hard to have a friendship, hard to have a job, hard to have a significant other, and hard to be a good parent. She emphasized the importance of becoming a member of the ICA to help develop a good support system. In response to Dr. Moldwin’s comment to “Yank spouses to support groups and physician offices to get them educated,” Salin recounted a poignant memory. “I took my husband to an ICA national meeting in Orlando. He went into a closed session for spouses given by psychologists and came out a changed man.”

All of the patient advocates shared tips for living successfully with IC. Kevin said you need to figure out your own personal therapy. He wrote an e-book and that process really helped him. Teresa found Facebook and the IC Facebook Community really helps her to get her mind off of her symptoms. She also finds that listening to music can be really soothing. Teresa also encouraged meeting with other IC patients, “At a support group, you are able to be in a room with someone else who has IC. This validates what you have. A lot of IC patients bring family members and that is helpful…We have lively, open discussions… [and] laugh a lot because some of things are so personal and some things so embarrassing that you cannot help but laugh.” The ICA has a support group page on www.ichelp.org that lists support groups around the country. Some groups meet in person and others provide support by phone.

The panel ended by offering insights on how to optimize the physician-patient relationship:
    • Communicate: Dr. Rosenberg said “communication” was key and encouraged IC patients to “pick your primary care physician as someone that you can communicate with, knowing they will be your advocate through this process.”
    • Keep Trying to Find an Answer: Kevin encouraged patients not to give up, “Keep trying to find an answer, keep looking, keep looking.”
    • Have Hope: Teresa echoed his sentiment saying “You have to have hope.”
    • Educate Yourself: “Keep educating yourself, support your beliefs, and help yourself.” Linda emphasized that IC patients need to keep writing Congress to ensure dedicated funds for IC research and awareness. And, to keep supporting the ICA who is working on the behalf of the millions of people affected by IC.
    • Find the Right Doctor: Dr. Moldwin ended the conversation with advice to “Find the right person. The clinician-patient relationship has to be tight with this type of condition. Do everything in your power to get yourself better. Work with your doctor, nurse, and PT. Do things to take care of your life, take charge of your life. The ICA website has information on how to do this—check out the strategies on the ICA website (www.ichelp.org).

There are lots of online resources available to IC patients such as www.ichelp.org and www.allaboutIC.com. The “ICA is awesome” remarked Dr. Moldwin. They can help you:

Interstitial Cystitis Association: Conquering IC. Changing Lives.

Posted August 11, 2010