Dysautonomia Awareness Month, National Physical Therapy Month, and Spina Bifida Awareness Month all occur in October. This is a chance to shine a light on these often-misunderstood conditions, and to ask how the healthcare system can better serve those who live with them.
A symptom rarely exists in isolation. It acts in tandem with all the systems that make up the human body. And yet, the way the healthcare world is designed pigeonholes these connections into isolated specialties. This month highlights the need for healthcare that embraces all the interconnections of the human body.
At InclusiVibe Foundation, our work centers on helping healthcare systems connect those dots. Because when symptoms cross diagnostic boundaries, real people can fall through the cracks.
The Trouble in Diagnosing Dysautonomia
According to Dysautonomia International, “dysautonomia” is an umbrella term for conditions that impact your autonomic nervous system. It’s the system that regulates basic body functions, such as your heart rate, blood pressure, digestion, kidney function, and temperature. And when it malfunctions, there are several symptoms you could endure, like fainting, malnutrition, abnormal heart rates, unstable blood pressure, and more. Needless to say, these symptoms can be attributed to many issues, and it’s often difficult to untangle each issue apart to find the root cause.
For others with ambiguous conditions, we have observed that many people’s symptoms are initially dismissed as simple anxiety or other psychological causes. It’s only after jumping through hoop after hoop that many finally start to get taken seriously. This is a tale as old as time. That’s why it’s so critical that providers pause and examine how each patient’s seemingly-unrelated symptoms could sum up to something bigger. And for people with hypermobile EDS, these problems aren’t rare. Issues with heart rate and blood pressure regulation are common in this group (Hakim et al., 2017).
National Physical Therapy Month
Good care sees the whole person.
National Physical Therapy Month and Coordinated Care
Physical therapy can help you work toward greater function, manage your symptoms, and participate in activities that matter to you. But effective rehabilitation must account for the individual in all of their facets, not simply the most immediately apparent symptoms or a standard exercise plan.
Let’s say you have a condition such as Ehlers-Danlos syndromes (EDS) or Hypermobility Spectrum Disorders (HSD). These aren’t just joint conditions. They affect connective tissue throughout the body, and many people live with pain, fatigue, dizziness, digestive issues, headaches, and more (Tinkle et al., 2017). At first glance, these symptoms can seem completely unrelated, so different specialists often treat them one at a time.
That’s why it’s so critical that physical therapists and other medical professionals look at the entire picture. Effective care for hypermobility-related conditions looks at the whole person, including joint control, body awareness, pain, and fatigue, instead of focusing on one joint at a time (Russek, Stott, & Simmonds, 2019). Better yet, providers should communicate with each other to make the patient’s care more cohesive.
That’s why it’s so critical that physical therapists and medical professionals look at the entire picture and see how it all comes together. Better yet, they should communicate with each other to make the patient’s care more cohesive. Connecting the dots is where real care begins.
Spina Bifida and Looking Beyond One Diagnosis
Spina bifida is a neural tube condition that affects the spine’s development. And it can have impacts that go far beyond the confines of that specific diagnosis. For example, as the Spina Bifida Association notes, one common complication is a tethered spinal cord. With it, the spinal cord attaches abnormally to surrounding tissue, places pressure on the cord and nerves, and causes incredible pain or other severe neurological symptoms. But here’s the thing: as the National Institute of Neurological Disorders and Stroke (NINDS) notes that a tethered spinal cord can happen to people who don’t have spina bifida,() including some people with Ehlers-Danlos syndromes (Henderson et al., 2017). And those people shouldn’t be missed, either.
That’s what makes it so critical for healthcare professionals to look beyond just the most obvious diagnosis. After all, different spinal cord conditions can require different specialists and coordinated care. If professionals stay too tunnel-visioned on one possible outcome, they may fail to get to the core of a person’s experiences and suffering.
Connecting the Dots: The Importance of Whole-Person Care
When patients’ symptoms don't fit neatly into familiar diagnostic categories, they may have to waste precious time and energy. Patients may find themselves repeating their histories, seeking referrals, and trying to connect the findings from multiple appointments. In all that time, they could have gotten the support they actually needed.
Addressing these gaps goes beyond encouraging individual providers to have more compassionate attitudes. It calls for more action. It calls for better collaboration, meaningful patient-experience research, accessible education, and healthcare practices that encourage communication across medical boundaries.
It also requires recognizing patients as knowledgeable partners in their own care. Their observations, lived experiences, and accounts of changing symptoms aren’t just subjective experiences. They can provide important data for clinical evaluations.
InclusiVibe's mission reflects this approach. We help advance healthcare equity, empower patients to tell their stories, and support research shaped by people with disabilities’ real, lived experiences. By bringing patient-led health to the forefront, we can help build systems that truly understand the patients they serve.
Reference:
Tinkle B, Castori M, Berglund B, Cohen H, Grahame R, Kazkaz H, Levy H. 2017. Hypermobile Ehlers–Danlos syndrome (a.k.a. Ehlers–Danlos syndrome Type III and Ehlers–Danlos syndrome hypermobility type): Clinical description and natural history. Am J Med Genet Part C Semin Med Genet 175C: 48–69.
Hakim A, O'Callaghan C, De Wandele I, Stiles L, Pocinki A, Rowe P. 2017. Cardiovascular autonomic dysfunction in Ehlers–Danlos syndrome—Hypermobile type. Am J Med Genet Part C Semin Med Genet 175C: 168–174.
Leslie N Russek, Patricia Stott, Jane Simmonds, Recognizing and Effectively Managing Hypermobility-Related Conditions, Physical Therapy, Volume 99, Issue 9, September 2019, Pages 1189–1200, https://doi.org/10.1093/ptj/pzz078
HendersonSr. FC, Austin C, Benzel E, Bolognese P, Ellenbogen R, Francomano CA, Ireton C, Klinge P, Koby M, Long D, Patel S, Singman EL, Voermans NC. 2017. Neurological and spinal manifestations of the Ehlers–Danlos syndromes. Am J Med Genet Part C Semin Med Genet 175C: 195–211.
National Institute of Neurological Disorders and Stroke. (n.d.). Tethered spinal cord syndrome. National Institutes of Health. https://ninds.nih.gov/Disorders/All-Disorders/Tethered-Spinal-Cord-Syndrome-Information-Page
Spina Bifida Association. (n.d.). Spinal cord tethering. https://www.spinabifidaassociation.org/resource/spinal-cord-tethering
Dysautonomia International. (n.d.). What is dysautonomia? https://dysautonomiainternational.org/page.php?ID=34
Disclaimer:
This article was written by Jill Feder, and AI tools like Grammarly and ChatGPT were used to give the article a final polish. The InclusiVibe team reviewed all content.