Rare disease rap: Patient advocate writes song to raise awareness
BALA CYNWYD, Pennsylvania (WPVI) -- "I worked in radio for over 35 years until rare disease had other plans," said Romy Braunstein.
Whether on the airwaves or behind the scenes, Braunstein loved her career. Her work took her around the country and introduced her to stars like Ricky Martin and various American Idol judges and contestants.
All the while, she was hiding an otherwise invisible disability.
"I was misdiagnosed with MS in 2001," said Braunstein. "And then I was really diagnosed with Lambert Eaton myasthenic syndrome in 2003."
She recalls her symptoms including unexplained falls, chronic fatigue, and difficulty walking. Essentially, the disease interrupted communication between her nerves and muscles.
But after a long journey of seeing various doctors and enrolling in a clinical trial, Braunstein was able to find a medication that ameliorated her lifestyle.
"The medication has saved the quality of my life," she said. "And now I am fueled and passionate by that to tell everybody in every community to identify symptoms."
Braunstein accomplishes that by making social media content. But she has become especially vocal with her latest passion project.
"Over the last 10 years, through my work experience and all my experiences, I wrote a rap song," she said.
Braunstein utilized the custom music creation company, Songlorious, to collaborate with a Detroit-based artist, J Roy. In just a few days, Braunstein's written lyrics came to life.
"It literally talks about: Am I in pain? Do I need a cane? Muscle weakness, chronic fatigue, unexplained falls, things you can't see," she said. "If people started singing that and resonating with it, they're gonna be like, 'That's me!'"
The song, titled, "99," can now be found on streaming services.
Braunstein was invited by WMGK's Andre Gardner, a longtime friend and co-worker, to sing along with the song as it boomed through the in-studio speakers.
"I really want the song, actually, to be like the anthem for rare disease," said Braunstein. "There's some amazing doctors that are there to make you have a better quality of life again. So, it can happen as long as you get the diagnosis."
Rare Disease Day is recognized on February 28. For more information and resources, visit the website for the National Organization for Rare Disorders.
To learn more about Romy Braunstein's advocacy, visit her Facebook page.
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