On this, the last day of IC Awareness Month, we honor those patients and providers who are no longer with us. Many helped the IC movement become the vital, vibrant community. Daniel Brookoff MD was the first doctor who advocated for the aggressive and compassionate treatment of the pain of IC. C. Paul Perry MD, a co-founder of the International Pelvic Pain Society, who helped to create the first professional organization dedicated to the relief of pelvic pain.
We honor IC group leader Michaeleen Franklin, of Tucson AZ, who was the longest serving IC group leader in the USA before she suddenly passed a few years ago in a plane crash and Diane Manhattan, co-founder of the IC Network Support Forum, who is believed to have lost her life due to the actions of a mass murderer working in a hospital. She was one of his last patients before he was arrested.
And to the many patients who, through no fault of their own, suffered indignity after indignity because IC was not recognized during their life times. We acknowledge their struggles, their pain and their difficulties finding health care. Young and old, single and married, we lost you far too soon! We will continue to try, every day, to honor your memory.
One hundred years ago, IC was barely recognized as a medical condition. Patients were often suspected of having bladder stones or tuberculosis in the bladder.
Fifty years ago patients with IC were often sent to mental hospitals out of the mistaken perception that IC was a mental disorder. They, too, often lived in despair.
Thirty years ago, patients with IC found a sanctuary in the first organized support groups in the United States, Canada and England. But many still were told that I wasn’t real and were denied care.
Twenty two years ago, the first website and online support group (The Interstitial Cystitis Network) was created for IC patients. Many new therapies were under development, including Elmiron. Patients began to feel hope.
Fifteen years ago, more IC patients were received a prompt diagnosis. The IC research movement was thriving. The first supplements were created (CystaQ, Desert Harvest Aloe, CystoProtek) that provided hope for patients who lacked access to traditional health care or who could not afford treatments.
Six years ago, new diagnostic and treatment guidelines were passed in Europe, Japan and the USA which created new, consistent treatment plans that have helped millions.
Today, thanks to the new CDC Guidelines for Chronic Pain, many IC and pelvic pain patients have been denied pain treatment and/or have been forcibly discontinued from their use of opiate medication even when using it at low doses with no signs of addiction.
There is much work to be done. Chronic pain patients need support, care and compassionate treatment. Let us continue the fight through the coming year by sending letters to our representatives and the CDC, requesting if not demanding that the guidelines be revised to provide compassionate care to those patients who use opiates effectively and responsibly.
THANK YOU to everyone who participated in this years campaign. – Jill H. Osborne, IC Awareness Month Leader & IC Network Founder