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Brain tumor survivor builds on-line support network
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Brain tumor survivor builds on-line support network

Beth Rosenthal with her father, Jerry, of Springfield.
Beth Rosenthal with her father, Jerry, of Springfield.

Beth F. Rosenthal was once a child who lived for dancing and gymnastics and dreamed of becoming a high-powered professional.

That dream was short-circuited when at age 11 she was diagnosed with a benign brain tumor. After her first operation, the Edison woman’s life would never be the same.

“I didn’t know I’d wake up and never be able to do another cartwheel or somersault again,” said Rosenthal, now 37. “My life would have been so different if I didn’t have to live with excruciating pain for 13 years. It’s hard to mature emotionally when you’re in pain. It’s hard to learn when you’re in pain. It took away my passion. I was very angry for a long time.”

Two years ago Rosenthal rediscovered her passion after launching a website, itsjustbenign.org. It provides information, support, and a means of communication for those diagnosed with benign brain tumors and their caregivers.

The site has attracted more than 400 members worldwide. Rosenthal currently runs an in-person support group in central Jersey and hopes to establish other chapters throughout the United States and the world.

“Even now, benign brain tumor survivors still feel no one gets it,” said Rosenthal. “My experience was very isolating. I had difficulty finding people who understood my many challenges. No one asked me anything: not how I was, not did I need help — nothing. My family, friends, peers, neighbors let me down by not showing interest.

“Unfortunately, I learned and felt that no one cared about me.”

‘Positive energy’

While there are support groups for individuals with malignant brain tumors, Rosenthal discovered their members’ major focus is an understandable fear of death. For those suffering seizures, migraines, and learning disabilities from benign tumors, there was no such support network.

Rosenthal said she spent almost 13 years overshadowed by pain and thoughts of suicide. Rosenthal’s parents — who by that time had been divorced for many years — sought out pain specialists throughout the country. After taking about 100 different drugs — from heart medications to anti-depressants — Rosenthal found a doctor in 2002 who came up with a drug combination that made the pain tolerable. For her current state of relative good health, she credits her parents for their support and the “wise decisions” made about her care and the physicians who have treated her.

Rosenthal is now actively working to educate the public by contacting organizations, pharmaceutical companies, school districts, and synagogues. The website already has doctors and other medical professionals who will answer questions on-line, and others are being sought.

The site also offers blogs for those with specific issues — concerns about medications or chronic seizures, for example — and forums, including one for religious members.

Rosenthal, who became bat mitzva at Temple Emanu-El in Edison, acknowledged that her illness caused her to have a less than positive view of religion. However, at her last job — she is now on disability — she worked with several women who are Baptists suffering from a variety of ailments “but just full of positive energy” who helped soften her opinion. She sometimes attends synagogue with her father, Jerry Rosenthal of Springfield.

“After years of hard work, organizing my life, and clarifying what is important to me, life is finally good again,” said Rosenthal. “My life is beginning to have meaning, and I am starting to find fulfillment.”

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