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Ehlers-Danlos syndrome, or EDS, is a genetic connective tissue disorder that can affect nearly every system in the body. Yet many people spend years living with unexplained pain, frequent injuries, gastrointestinal concerns, cardiovascular symptoms, and other challenges before receiving a diagnosis.
In this episode, Corey speaks with physical therapist Dr. Emma McCauley about the difference between hypermobility and EDS, why diagnosis can take more than a decade, and how racial disparities can make that journey even longer for people of color.
Dr. McCauley also explains how physical therapy can help people improve joint stability, body awareness, movement, and quality of life. The conversation highlights the importance of listening to patients, building diverse healthcare professions, and helping people find ways to live full lives while managing chronic conditions.
Show Notes
Ehlers-Danlos syndrome is often associated with flexibility, but the condition can affect far more than a person’s joints.
Dr. Emma McCauley joins The Healthy Project Podcast to explain how EDS affects connective tissue throughout the body and why symptoms can look different from one person to another.
Corey and Dr. McCauley discuss the long road many patients face before receiving a diagnosis. They also explore why pain reported by Black patients and other patients of color may be dismissed, contributing to even longer delays in receiving answers and care.
Dr. McCauley explains the role physical therapists can play in recognizing patterns, helping patients understand their bodies, and connecting them with other healthcare professionals.
In This Episode
- What Ehlers-Danlos syndrome is
- The difference between EDS and general hypermobility
- Why an EDS diagnosis can take 10 to 12 years or longer
- How racial bias and pain dismissal affect diagnosis
- Why EDS is not only a white person’s condition
- How EDS can affect the cardiovascular, gastrointestinal, nervous, and musculoskeletal systems
- The connection between hypermobility and neurodivergence
- How physical therapy improves proprioception, stability, and body awareness
- Why movement may feel awkward when patients learn new patterns
- How physical therapists help patients make long-term lifestyle changes
- Why representation matters within the physical therapy profession
- How Iowa’s direct-access laws may allow patients to see a physical therapist without a referral
Episode Timestamps
00:48 – Dr. Emma McCauley’s path to physical therapy
02:22 – How she began working with patients with EDS
03:53 – Understanding EDS and hypermobility
04:58 – The long road to receiving a diagnosis
06:43 – Why EDS is not a white person’s disease
08:06 – Racial disparities in pain treatment and diagnosis
09:13 – Diversity and representation in physical therapy
11:52 – Why physical therapists may have more time to listen
13:18 – Proprioception, joint stability, and body awareness
16:55 – EDS and the aging process
17:13 – Comorbidities, mental health, and neurodivergence
19:28 – Helping patients experience more of life
21:02 – Physical therapy as long-term lifestyle management
22:20 – How to begin seeking physical therapy services
24:10 – How to connect with Dr. Emma McCauley
02:22 – How she began working with patients with EDS
03:53 – Understanding EDS and hypermobility
04:58 – The long road to receiving a diagnosis
06:43 – Why EDS is not a white person’s disease
08:06 – Racial disparities in pain treatment and diagnosis
09:13 – Diversity and representation in physical therapy
11:52 – Why physical therapists may have more time to listen
13:18 – Proprioception, joint stability, and body awareness
16:55 – EDS and the aging process
17:13 – Comorbidities, mental health, and neurodivergence
19:28 – Helping patients experience more of life
21:02 – Physical therapy as long-term lifestyle management
22:20 – How to begin seeking physical therapy services
24:10 – How to connect with Dr. Emma McCauley
About Dr. Emma McCauley
Dr. Emma McCauley is a physical therapist at Kinetic Edge Physical Therapy in the Des Moines area. Her work includes helping people with hypermobility and Ehlers-Danlos syndrome better understand their bodies, build stability, manage pain, and improve their quality of life.
Connect with Dr. Emma McCauley
Kinetic Edge Physical Therapy
6000 Grand Avenue
Des Moines, Iowa
6000 Grand Avenue
Des Moines, Iowa
Email: emma@kineticedgept.com
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Creators and Guests
What is The Healthy Project Podcast?
The Healthy Project Podcast explores the powerful intersection of health, society, and equity through real conversations with changemakers on the front lines of social impact. Each episode features thought leaders, researchers, and advocates who unpack how social structures — from policy to culture — shape the health of communities.
Topics we explore include:
Health equity and structural determinants
Community-driven research and innovation
Lived experiences of marginalized populations
Public policy, systemic bias, and health outcomes
Whether you're a public health professional, social science researcher, policymaker, or community advocate, this podcast brings you grounded insights, bold ideas, and practical tools to drive change where it matters most.