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Stories of Hope
 

Raising the Curtain on Awareness
By Debra Nelson-Hogan

Cynthia Toussaint’s career as a ballerina was ended when a pulled hamstring led to CRPS. Today she is dedicated to CRPS awareness and HMO reform.

When Cynthia Toussaint watched Funny Girl the first time, she turned to her mother and said, "I never want this to end." From that point on, she says, she knew she was meant to be a performer. And although she became an accomplished ballerina, studied acting and piano, her most recent significant performance was before a Senate Hearing in California to discuss her frustrations with an HMO system that has consistently failed CRPS patients.

At 21, Cynthia was a ballerina with a promising future, and considered herself an extraordinarily lucky person until a pulled hamstring changed the direction of her life. Doctors told her it would heal with time and rest. Instead, the injury triggered CRPS, which ended her dance career and began a 15-year journey through a medical universe that failed to diagnose and treat CRPS.

That was 19 years ago, and for the first 13 years, “HMO doctors told me my problems were all in my head while the disease progressed throughout my entire body, eventually leaving me bedridden with chronic, intractable pain,” she says. “I was assured by everyone that the sharp, burning, excruciating pain in my leg would be OK with rest, but OK never came. Instead if felt as if my leg had been doused in gasoline and set on fire. I suffered constant muscle spasm, my leg became swollen, sweated profusely, and was cold.”

After her injury, Cynthia worked in a Las Vegas illusion act out of “desperation to stay on stage and hold on to some semblance of my dreams.” However, the CRPS spread to the other leg and Cynthia finally moved home to her mother’s house.

“I really believed the doctors at Kaiser Permanente would help me out of my downward spiral. I assumed they would provide me with sound medical care and compassion. Instead I was subjected to relentless abuse and ridicule. For 13 years my doctors condescendingly told me it was in my head. I continued to fight for care and my family and friends abandoned me because I was not believed. The emotional pain became as bad as the physical. The isolation, the depression, the sadness, despair and the loss of independence, loss of having a career, loss of having a child, thoughts of suicide,” she adds.

Her ordeal through the Kaiser Permanente HMO and a series of physicians who failed to diagnose her condition, led to a malpractice suit against the giant healthcare organization. Because her parents had signed away her right to a jury when she was three years old, the result was a mandatory binding arbitration. The meeting was canceled and rescheduled and the hearing delivered a number of abuses: testimony was recorded on camera, the room was ice cold and the HMO applied pressure to remove her partner and caregiver from the room. Her suit against Kaiser, still pending, has strengthened her resolve to fight for CRPS awareness, disability rights and HMO reform. “I believe in universal health care. You can't offer incentives not to treat someone,” she emphasizes.

Finally, in 1995, she was diagnosed with CRPS, her physician told her she would never get better and prescribed two Tylenol® twice a day for the pain. She decided there had to be better information available to CRPS patients and to prescribing physicians. Cynthia decided to devote her energies to raising awareness of CRPS, which led her to connect with California Senator Liz Figueroa (D-District 10), chair of the business and corporation committee. Although she was put on the back burner for two years her persistence paid off. On May 11 a senate hearing was held to exchange information and begin to educate agency representatives, California State Agencies and, specifically, Health Services about CRPS.

At the hearing, Senator Figueroa said, "Cynthia discussed her physical condition and frustration with the HMO system. Her timing is excellent, because simultaneously, I’ve heard from various women’s health groups that this is an area to be looked at. CRPS is one of those areas that women face in larger numbers than men, and when women go to physicians it is discarded, as 'it's something in your head’."

Those present seemed particularly impressed by the fact that Cynthia and her partner of 19 years, John Garrett can't legally marry because she would lose her SSI standing and her healthcare coverage from Medi-Cal.

“John and I have been together for 21 years. I consider John my husband, although we cannot legally marry due to Social Security marriage penalty. A legal marriage to John would mean losing my disability benefits and my health care,” she says. “I'm dedicated to CRPS awareness and HMO reform, both of which give my life great purpose,” she notes. She and John are starting a non-profit organization called “For Grace” for the daughter they will never have. “Without a doubt, I see awareness in the medical and public communities as the number one way to wage war. People with CRPS do not have to live their lives in pain, don’t have to suffer economic ruin; do not have to be abandoned by family and friends. They don't have to take their own lives by their own hands-the ultimate pain killer,” she said at the hearing. She concluded, “I am entrusting you with the future of CRPS. I’m overwhelmed by the possibility for change. I see a future for CRPS where another ballerina will not be cut down at the beginning of her career but will continue to soar and astound the world with her grace.”

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