Patient Profile: Radio Personality Lends Voice to Advocacy Efforts

July 23, 2012

Randye KayeA complex mental disorder, schizophrenia affects nearly 3 million people nationwide. For actress and radio personality Randye Kaye, it only took one diagnosis for her to take action and lend her voice to the national advocacy groups attempting to break the barriers and stigma around the condition.

Kaye’s son, Ben, was diagnosed with the disorder when he was 20, though it had been affecting him since his midteens.

“At first, I didn’t see anything that wasn’t just typical adolescence – mood swings, rebellions,” said Kaye. “But then it started getting more extreme. He was losing friendships, dropping out of school in the middle of his junior year without a plan, and becoming more and more isolated.”

Kaye took a proactive approach and began consulting psychiatrists and attending meetings at the National Alliance on Mental Illness (NAMI) to become better versed on what her son’s symptoms could mean. She enrolled in the NAMI Family-to-Family course, a free, 12-week course for family caregivers of individuals with severe mental illnesses. For the next two years, the family made it their mission to find Ben the right medications and psychiatrist.

“A lot of it was trial and error, seeing if his symptoms got better or not,” said Kaye. “Early detection is a great thing, but it is difficult. We had many years of confusion before the diagnosis. Once we knew it was a brain disorder, we could finally begin treatment. With careful monitoring, the trial and error paid off at last. The more treatment options that were available, the more hope we had.”

Kaye later became certified as a state trainer for the NAMI Family-to-Family program in Connecticut. She speaks frequently to audiences about the process of coping with the challenges when mental illness strikes a loved one. She is also on the NAMI teaching team for Provider Education, an educational series for professionals in the field, and is a diversity trainer for the Anti-Defamation League. Previously, Kaye was a noted onair personality and news director for a top-rated Connecticut radio station from 1992-2005, and continues to work for the NPR affiliate WSHU. She hosted the talk show “Issues and Answers” on Connecticut TV, and recently appeared on the educational DVD, “Dealing withStigma in Mental Illness.”

“One thing that helped me as a caregiver was learning as much as I could,” said Kaye. “With any traumatic news, you go through all the stages – denial, grief, anger. With mental illness, you have to add stigma, embarrassment and guilt before you get to acceptance.”

Ben Behind His Voices

In addition to her commitments as a trainer and professional speaker, Kaye is also the author of “Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope,” published last September.

“I wanted to share our story, because I knew how much other stories helped me,” she said. “It’s a personal account of our journey – mine, my daughter’s and my son’s – with resources peppered in. No mother, family, provider or patient can do it alone. We wanted to share the chaos, but also the hope, and show that success is possible.”

It has been 10 years since Ben was diagnosed and began treatment. He is now taking courses towards an associate’s degree in general education or drama, and has made the Dean’s List seven semesters in a row. He has also kept up a part-time job for the past year.

“He’s beginning to get his life back,” said Kaye. “He has a new sense of purpose, which I think has always been there, but was covered up by these symptoms.”

Sunovion Pharmaceuticals, based in Marlborough, has taken a strong interest in Kaye’s story and is partnering with her to educate caregivers about the need to build a strong therapeutic alliance with healthcare professionals in order to find the right treatment plan for their loved ones with schizophrenia. Kaye has spoken to employees of Sunovion at both its Marlborough headquarters and its office in Fort Lee, N.J. The company specializes in treating disorders of the central nervous system and respiratory diseases.

In May, Kaye joined Dr. Peter Weiden of the University of Illinois at Chicago to speak to psychiatrists in a session sponsored by Sunovion at the American Psychiatric Association annual meeting.

“I’ve been thrilled to team up with Sunovion and work out how we can help each other and the mental health community, while reaching out to a bigger audience,” said Kaye.

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