Carmen Gonzales turned personal medical trauma into a mission to prevent others from suffering years of misdiagnosis

What started as a desperate search for answers in 2013 has become a statewide movement to raise awareness about a little-known condition affecting tens of thousands of Louisianians.

Carmen Gonzales, founder of Dysautonomia Louisiana, received a proclamation from the West Baton Rouge Parish Council Thursday night, marking another milestone in her ambitious goal to visit all 64 Louisiana parishes to spread awareness about dysautonomia—a neurological condition that disrupts the body's automatic functions.

A Journey Through Medical Darkness

Gonzales' advocacy mission began from a place of profound personal struggle. As a career-driven single mother of two teenagers, she watched her life unravel over five years of declining health that landed her in hospitals 28 times, required multiple heart surgeries, and included a life-threatening medical flight—all before age 45.

"I promised myself while I was sitting on my front porch every day that I would go to every parish," Gonzales told the council. "All the doctors just missed it because they just don't know enough about it."

Her diagnosis finally came not in Louisiana, but in Nashville, Tennessee, where specialists identified dysautonomia in a single day after years of medical mystery. The condition affects the autonomic nervous system, which controls heart rate, blood pressure, digestion, and other automatic body functions that most people never think about.

Building a Movement One Connection at a Time

Rather than retreat after her diagnosis, Gonzales began reaching out to her community, knowing she couldn't be the only person in Louisiana struggling with this condition. Her instinct proved correct as she began meeting others with similar stories of medical confusion and delayed diagnoses.

At an awareness event at Ochsner Hospital in New Orleans, she met Ashley Parish, then a high school sophomore who had been struggling with unexplained health issues since age 10. Despite her own challenges, the 16-year-old immediately joined Gonzales' awareness efforts.

A chance encounter at a crawfish boil connected her with Aimee Forte, a recent college graduate who had been experiencing seizure-like episodes and heart palpitations since age 13. After being "cleared by countless specialists," Forte finally received her dysautonomia diagnosis through a specialist Gonzales recommended.

From Dream to Official Nonprofit

Together, these three women with different dysautonomia stories began organizing awareness events throughout Louisiana. In 2021, their grassroots efforts became official when Dysautonomia Louisiana incorporated as a 501c3 nonprofit committed to statewide outreach.

"We now are 501c3, I've got a team of people behind me," Gonzales told the council. "I come out, create the new business. You guys give us a proclamation, and then we start reaching out to hospitals and doctors' offices and high schools and colleges."

Growing Crisis Demands Attention

The timing of their advocacy has proven critical. Dysautonomia now affects one in every 100 teens, and cases have surged since COVID-19, with many long COVID patients developing autonomic dysfunction.

"It's taken off like crazy since COVID. We've doubled in size in our membership," Gonzales explained to council members. "So I'm just trying to get out here so nobody struggles by themselves, because not knowing what you have, you can't treat it."

Parish-by-Parish Progress

Gonzales showed the council a map marking her progress across Louisiana's 64 parishes, with brown areas indicating parishes not yet visited. Her approach is methodical: request a proclamation, receive official recognition, then use that credibility to approach local hospitals, schools, and healthcare facilities.

The organization provides free education to medical facilities, EMT schools, and community groups. They offer lunch-and-learn sessions with hospitals, support groups for patients, and educational seminars designed to help healthcare providers recognize symptoms they might otherwise miss.

Local Impact and Future Goals

Council Chairman Carey Denstel and Parish President Jason Manola presented the official proclamation recognizing October as Dysautonomia Awareness Month in West Baton Rouge Parish, adding another parish to Gonzales' statewide map.

"All the awareness that we raise is completely free of charge to the facilities as well as your community members," she told officials. "And I come to you guys first, because you're the movers and the shakers of the parish."

What Is Dysautonomia?

According to the Cleveland Clinic, dysautonomia is "a condition which affects the proper function of the autonomic nervous system (ANS). This affects the heart, bladder, intestines, sweat glands, pupils and blood vessels."

The condition's symptoms can be dismissed as anxiety, stress, or other common ailments, leading to the diagnostic delays that Gonzales and her team experienced. Their mission focuses on education to help both patients and healthcare providers recognize the signs earlier.

"Creating Awareness One Parish at a Time"

As Gonzales continues her parish-by-parish journey across Louisiana, her message remains focused on preventing others from enduring the years of uncertainty she faced.

"If we reach just one person, so they do not struggle for years to receive a diagnosis and proper treatment, then we have achieved our goal," the organization states. "We will work tirelessly until every parish, hospital, school, and community in Louisiana have been touched by our group."

For West Baton Rouge Parish residents dealing with unexplained symptoms affecting heart rate, blood pressure, or other automatic body functions, Gonzales' visit represents both awareness and hope—proof that answers exist, even when they seem impossible to find.

For more information about dysautonomia or to connect with support resources, visit Dysautonomia Louisiana at www.dyslou.org.

The West Baton Rouge Parish Council meets on the second and fourth Thursday of each month at 5:30 p.m. at the WBR Governmental Building, 880 N. Alexander Avenue, Port Allen.

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