IC Awareness Month Daily Fact #30 - Honoring Those Before Us

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 of 2014. 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 Evelyn White, co-founder of the IC Redwood Empire support group which was the precursor to the IC Network, taken far too soon after a valiant fight with cancer. We are grateful to every man and woman who started support groups!

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.

Twenty five 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.

Nineteen 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.

Ten 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.

Five 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.

And today, in 2014, IC patients have more resources, more qualified medical care providers and far more information than ever before. We are more hopeful today than ever before due, entirely, to the struggles and successes of those who came before us.

THANK YOU! – Jill H. Osborne, IC Awareness Month Leader & IC Network Founder