"Creating Awareness One Parish at a Time"
We are the VOICE and the STRENGTH for those who struggle for a diagnosis of dysautonomia, due to lack of education and awareness. We are the HELPING HANDS that find resources for our members and their caretakers, so no one travels this journey alone. We are here to bring KNOWLEDGE and AWARENESS to medical providers and the general public, so dysautonomia is no longer unheard of.
LET'S BE SOCIAL!
Our story of
INSPIRATION
Pictured above: Carmen Gonzales during one of her many hospitalizations
Back in 2013, Dysautonomia Louisiana was just a dream!
It was merely a thought and prayer of Carmen Gonzales, a career-driven, single mother of two teenagers. Carmen was diagnosed with dysautonomia after five years of declining health issues, which had landed her in the hospital twenty-eight times. She underwent several heart surgeries and a death-defying lifeflight all before the age of forty-five. This diagnosis was life changing; it turned her world upside down and halted her career in its prime. She knew right then that no one should travel this journey alone. So she began researching and reaching out to her local community knowing there was no way she could be the only one in Louisiana with dysautonomia.
Carmen took the leadership role, after meeting others who had even more struggles navigating through the challenges of this unheard of condition. During an awareness event at Ochsner Hospital in New Orleans, Carmen met Ashley Parish and her parents, who were there seeking medical treatment. Ashley was in her sophomore year of high school at the time and she had a list of health issues. Her parents were adamant in finding answers and support for their fragile daughter who had been struggling for a diagnosis since the age of 10. Prior to this visit, she had just been diagnosed with dysautonomia and was in New Orleans looking for answers. Ashley was bright, energetic, and was not going to let this diagnosis get her down. In fact, she jumped right in and started helping Carmen create awareness across the state, at the young age of just 16.
"After getting cleared by countless specialists, she and her family were left with no answers to some very concerning questions."
Pictured above: Carmen Gonzales and Ashley Parish at a Dysautonomia Proclamation
In the meantime, Carmen stumbled across Aimee Forte at a crawfish boil. Aimee was fresh out of college, had just landed a position as graphic design tech for a local print shop, and was planning her dream wedding. As the two sat and talked and really got to know each other, Aimee seemed to realize Carmen’s health struggles sounded a lot like hers, but she had never heard of dysautonomia. Aimee explained she began experiencing seizure-like episodes, irregular heart palpitations, and chronic fatigue at the young age of 13. After getting cleared from countless specialists, she and her family were left with no answers to her unexplained health issues. Aimee eventually sought help from a dysautonomia specialist, which Carmen referred her to, and finally received a diagnosis of dysautonomia, specifically postural orthostatic tachycardia syndrome. Acquiring that diagnosis was half the battle and was the turning point of regaining her stability of health, getting her back to the life she was striving for.
With much determination, the three ladies with similar, yet different journeys got the ball rolling to find others who have a diagnosis of dysautonomia. Together, Carmen, Ashley and Aimee started organizing awareness events throughout Louisiana.
Dysautonomia Louisiana, Inc is the vision of these three ladies, each one with a different story of dysautonomia and its effects in their lives. Together, the three collaborated all efforts, knowledge, and resources and in 2021, Dysautonomia Louisiana became an official nonprofit corporation committed to dysautonomia awareness and outreach within the state of Louisiana.
Pictured above: Carol Meyer, Carmen Gonzales, Aimee Forte, and Danielle Jerral at Painting with a Twist for Dysautonomia Awareness
If you or someone you know is interested in joining Dysautonomia Louisiana, please contact us at dys.lou.info@gmail.com
Meet our
Carmen Gonzales
President/Founder
Ashley Benoit
Executive Director/Secretary
Aimee Forte
Director of Finance/Graphic Designer
ADVISORY BOARD
Meet our
Cardiologist
Nurse
Nurse Practitoner
Immunologist
Contracts Pending... Please visit this at a later date
Dr. James McKinnie
In memory of
Our awareness efforts will be dedicated to
Dr. James Jude McKinnie, who passed away on May 23, 2019, at the age of 62 following a courageous battle with cancer.
The devotion for his patients and knowledge of dysautonomia/electrophysiology was remarkable. He will be missed by many. Thank you, Dr. McKinnie, for believing in us.
