Editor’s Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak with patients about opportunities related to their diagnosed conditions. These opportunities can include activities such as sharing stories with other patients or health professionals about their diagnosis journey or recording video testimonials. To learn more about how to get involved with an opportunity for Lambert-Eaton myasthenic syndrome (LEMS) patients, click here.

To say that Romy Braunstein has always loved music would be an understatement. Songs resonated with her; she loved just closing her eyes and losing herself in the rhythm, the beat, the lyrics. Eventually, Braunstein turned her musical passion into a career. In her work in radio, Braunstein discovered new artists, traveled across the United States, and even met musical stars like Ricky Martin. But, shares ABC 11 Eyewitness News, this journey was also fraught with challenges such as her Lambert-Eaton myasthenic syndrome (LEMS) diagnosis.

In 2001, Braunstein underwent back surgery. Throughout the recovery process, and even after, Braunstein started feeling generally unwell. She was incredibly fatigued and struggled to walk. Sometimes, she fell over. Then the falls became more common. Doctors could not figure out what was happening. Eventually, they determined that Braunstein had multiple sclerosis (MS), a neurodegenerative disease. The only problem? This diagnosis was not correct. It wasn’t until two years later that Braunstein officially received her (much more accurate) LEMS diagnosis. Joining a clinical trial and finding an effective medication both helped Braunstein to live a better, happier life.

To Braunstein, raising rare disease awareness is a mission of utmost importance – but she also wants to make sure that people who are part of this community don’t feel alone. She channeled her energy into her forever love: music. Through Songlorius, Braunstein collaborated with J Roy, a Detroit-based music artist who appeared on Netflix’s Rhythm & Flow, to create a powerful rap song entitled “99.” Lyrics from the song include:

Rare disease comes in every situation

Look like she’s in pain

look like she needs a cane

A lot going on but you can’t see a thing

99 symptoms, you can’t see one

99 symptoms, don’t know the next one

Advocate today if you don’t feel okay

Through sharing her song far and wide, Braunstein hopes to inspire others. And if “99” becomes a rare disease anthem? That only makes it better!

About Lambert-Eaton Myasthenic Syndrome (LEMS)

Lambert-Eaton myasthenic syndrome is a rare autoimmune disease that affects the neuromuscular junction, or the site where muscle cells and nerve cells communicate. An autoimmune disease means that the body’s immune system mistakenly attacks healthy cells in its own body. In this case, the immune system attacks voltage-gated calcium channels (VGCC). Around 60% of people with LEMS have a comorbidity, most often small cell lung cancer (SCLC). VGCC is found on the surface of cancer cells, so autoantibodies may go to attack cancer cells and attack the neuromuscular junction instead. In the remaining 30% of individuals, who are often younger in age, underlying genetics are suspected, but the disease mechanism is still poorly understood.

Individuals living with LEMS may, but do not always, experience symptoms such as:

• Muscle weakness and fatigue (particularly in the arms and legs)
• Blurred vision
• Difficulty speaking, chewing, and swallowing
• Constipation
• Absent or diminished tendon reflexes
• Unintentional weight loss
• Dizziness
• Dry mouth and eyes
• Difficulty walking or lifting objects

No cures exist for LEMS, but patients can receive treatment in the form of Firdapse, Rigurzi (in pediatric patients), or plasmapheresis.