An estimated 70 million people worldwide are affected by disorders of the autonomic nervous system. Advocacy and research are improving awareness and care for them.
Disorders of the autonomic nervous system are classified under an umbrella term—dysautonomia. The autonomic nervous system controls involuntary bodily functions like heart rate, digestion, breathing, and blood pressure, essentially operating without conscious effort. Dysautonomia can manifest in various ways through a range of symptoms, but it often means that these subconscious vital functions are not working.
Among dysautonomia’s many forms, postural orthostatic tachycardia syndrome (POTS) has emerged as one of the most debilitating yet often misunderstood conditions.
“It took about 10 different doctors before someone finally diagnosed me,” shares Mary Collins, PhD ’23 from Walden University. Dr. Collins has known she has POTS since she was a teenager (pictured above), and it has shaped her academic and professional career. Her struggles with delayed diagnosis and invalidation fueled her desire to advocate for others.
A Personal Mission to Address Dysautonomia
“I was unable to attend high school in person because of all the medical issues,” Dr. Collins recalls.
Today, Dr. Collins is a post-doctoral fellow of clinical psychology working with teenagers and children to manage chronic illnesses. Her practice aims to empower young patients and their families, recognizing the critical role of social support in managing chronic conditions. Her own experiences being doubted and misunderstood in the doctor’s office resonate with many of her patients, especially those with POTS like her.
At Walden, Dr. Collins dedicated her dissertation—“The Relationship Between Exercise Self-Efficacy, Fear-Avoidance Beliefs, and Exercise in Individuals with POTS”—to answering the personal struggles she went through as a patient.
“With POTS, there’s a symptom called exercise intolerance, where symptoms worsen before they improve. Many patients avoid exercise out of fear,” she explains. “Helping patients overcome psychological barriers to manage symptoms is a critical aspect of care.”
The Dysautonomia Project: Bridging the Knowledge Gap
In 2024, The Dysautonomia Project (TDP) became one of the newest partners of the Adtalem Global Education Foundation. TDP has become a cornerstone for education and advocacy since its founding in 2014.
“Dysautonomia is one of the most misunderstood and misdiagnosed conditions,” says Alexandra Key, TDP’s executive director. The organization’s initial efforts centered on publishing The Dysautonomia Project book, which has since become a globally recognized resource. “Patients often describe it as the first thing that validated their experience,” Key says.
The Adtalem Foundation supports TDP’s flagship initiative, the Residents Course. It brings together second- and third-year medical residents from diverse specialties for intensive training in autonomic medicine. The program addresses a critical gap: autonomic disorders receive only two hours of coverage in most medical school curricula.
“We teach residents how to identify and manage autonomic dysfunction,” Key explains.
In 2025, TDP will expand their course offerings to introduce a one-day accredited Continuing Medical Education (CME) program for established providers, extending its reach to physical therapists, nurse practitioners, and other healthcare professionals. “The new program empowers established providers to recognize dysautonomia and widen access to care, potentially changing lives,” says Key.
Key highlights that the lack of training about the autonomic nervous system is a systemic issue.
The Dysautonomia Patient Journey: Challenges and Hope
Patients with POTS often endure years of misdiagnosis and invalidation, exacerbating their physical and mental health struggles. “Patients with dysautonomia frequently experience a mental health burden,” explains Dr. Collins. Symptoms like tachycardia, fainting, and exercise intolerance often mimic anxiety disorders, leading to misdiagnoses and delays in care.
Key emphasizes that even basic recognition of the condition can make a difference: “Just to be understood and validated brings hope for patients.” TDP’s resources, including a comprehensive online learning library and patient assessment tools, have become invaluable for both patients and providers.
For patients like Dr. Collins, social support plays a critical role. “My family was my biggest advocate,” she recalls. “Having someone with you during appointments makes a huge difference.” She now teaches her patients how to build support systems and navigate the healthcare system effectively.
Expanding the Reach of Dysautonomia Advocacy
One of TDP’s commitments is to integrate dysautonomia education into medical school curricula. The goal is to ensure that future physicians are equipped to recognize and treat these conditions from the outset of their careers. “We’re working with partners to introduce a new textbook on autonomic medicine,” says Key.
Dr. Collins’ journey from patient to advocate and researcher illustrates the transformative power of lived experience in shaping impactful careers. Her work, combined with TDP’s initiatives, offers a brighter future for those navigating the complexities of dysautonomia. Together, they are breaking down barriers, fostering understanding, and paving the way for better patient outcomes worldwide.
For more information, email the Adtalem Global Communications Team: adtalemmedia@adtalem.com.
