Brain tumor survivor offers education and support to other benign brain tumor survivors with website
May 20, 2013
EDISON — When Beth Rosenthal was diagnosed with a brain stem glioma in 1985 at age 11, she was thriving in gymnastics and dance and saw herself obtaining a PhD to follow in her parents footsteps. After going in for two craniotomies and several weeks of radiation therapy, she was no longer able to progress in gymnastics, dance or pursue the PhD she longed for. The removal of the tumor along with the radiation treatment led to a series of side effects that have permanently altered her life.
In 2008, Rosenthal started ItsJustBenign.org to help benign brain tumor survivors meet and chat with other survivors who can understand their experiences, side effects and their world.
“I started the website because many people hear the word ‘benign’ and don’t connect that even if it is benign, it’s pressing on something and needs to be removed,” she said. “I heard ‘you’re so lucky it’s just benign’ a billion times growing up and felt that a lot of people in my community and my school lacked compassion for what I was going through.”
Rosenthal has experienced motor skills loss to the left side of her body, her balance is off, she has difficulty utilizing her left arm, hand and fingers. She has lost hearing in her left ear. She said that the worst side effect was the nerve pain that started from the radiation treatment.
“The pain is what took over my life for 12 years,” she said. “Pain wasn’t studied yet, internet wasn’t around and the doctors my parents took me to didn’t want to treat a child.”
Despite all of her hardship Rosenthal managed to finish high school, obtain a Bachelors Degree and a driver’s license.
“It was the happiest time of my life and the hardest at the same time,” Rosenthal said.
She has come a long way since her earlier years. Currently on disability, she works part-time in finance. She said that she would not be able to work an eight hour day. When she isn’t working, she invests her time connecting with others on her website.
Since the launch, the site has 1,100 members from all over the world including South Africa, India, Australia, Manhattan and Kentucky to name a few. She said that members utilize the site to start blogs and forums to discuss their ailments.
“Let’s say someone in South Africa has chronic seizures and went from doctor to doctor, tried XYZ medicines and they start a forum on the site saying they’ve lost their license, miss their independence and wants to know if anyone has suggestions,” she said.
With the site, someone in Manhattan or Australia can write back saying they’ve been dealing with the same things, tried taking medicine X with Z and its starting to manage the seizures and as a result, they’re back at work, got their license back and began living again. The site also has an advisory board that supports and guides the organization as well as participates in Q & A’s from members. Shabbar F. Danish, MD, with the Robert Wood Johnson Brain Tumor Center is on the board. Rosenthal said that his contributions to the site have been very helpful.
“Connecting with others is empowering,” Rosenthal said. “ItsJustBenign.org is giving survivors their lives back.”
Staff Writer Jennifer Engelhart: 908-243-6602; firstname.lastname@example.org