What is I.C.?

One woman's story....

On March 7, 2002, PAUL MCLEAN returned to his Arlington, Virginia, home from his office at the U.S. Department of Defense and found his wife had committed suicide by shooting herself.   "Diane decided she'd had enough," says McLean.  An adventuresome woman who had lived all over the world, she could no longer work in her garden, go shopping with her daughter or do any of the things that used to bring her joy.  For 24 years she had battled Interstitial cystitis (IC), an incurable, often debilitating and extremely painful bladder disease.  And though she took prescription narcotics to dampen her near constant agony, the pills did little to make living easier.  "Diane said it was like someone twisting a knife inside her," says McLean.  Ultimately, Diane chose to surrender, and, says McLean, "I lost my best friend".

Taking one's own life is of course the most extreme reaction to an incapacitating illness, but for sufferers of IC (it is as common now as Diabetes I and the majority of suffers are women) it may seem like there is no other way out.   It's one thing to have a horrifically painful disease, but it's quite another to have a horrifically painful disease that doctors believe is feminine hysteria.  "We used to think it was all in their heads," says David Kaufman, M.D., assistant professor of clinical urology at Columbia University College of Physicians and Surgeons in New York City.   Indeed, many IC patients do have suicidal thoughts, says uroligist Philip Hanno, M.D., of the Hospital of the University of Pennsilvania in Philadelphia.  There's no understanding of what I.C. feels like unless you have it.  The constant pain may leave women who go undiagnosed and untreated  unable to work or leave the house.

Though recognition of IC among doctors has increased many still do not know enough about it.  There is still no cure for IC, but doctors are now able to offer some help.  The effectiveness of different drugs seems to vary from patient to patient.  "If something doesn't work, we move onto something else," says Robert Moldwin, M.D., director of the Interstitial Cystitis Center at Long Island Jewish Medical Center in New Hyde Park, New York.  Still, such inconsistent relief is insufficient (SELF, 2003).  IC sufferers long to be healthy and pain-free.

P.U.R.E. H.O.P.E. is a patient led support group association that:

* Provides education to patients, family members, friends, and other interested parties, about the nature of their disease(s) and/or condition(s), what to expect, medical treatments, self-help measures, research efforts, support organizations, and other relevant information regarding their conditions.

* Provides listening support for patients and members of their families.

* Offers valuable information and referrals to other resources available as well as referrals to health care providers that treat their conditions.

* Advocates in the public and private sectors for patients rights.

* Promote and provide research funding to find effective treatments.

* Interfaces with members of the medical community involved in treatment and research in an effort to increase their knowledge and awareness of the needs of patients, and to seek their assistance in disseminating information to their patients.

* Interfaces with other national, regional, and local organizations to learn about new treatment options, research efforts, or other relevant advances of interest to patients and other interested parties.

For additional information, please contact: csinclair@pure-hope.org or visit http://www.pure-hope.org