In this emotional and revealing interview, Donna Sullivan shares how her experience as a mother to children with Ehlers-Danlos Syndrome (EDS) led her into full-time advocacy. When her children faced chronic pain, misunderstood diagnoses, and rejection from hospitals, she realized the problem was bigger than her own family. Families across the country were being dismissed, misdiagnosed, and even accused of medical child abuse when seeking help for rare conditions. After witnessing the tragic suicide of a fellow advocate, Donna knew the silence had to end.

She discusses how she joined forces with director Andrew Abrahams to create Complicated, a feature documentary that follows four families over nine years. The film captures the medical, legal, and emotional crises that unfold when rare diseases is poorly understood. It also reveals the institutional arrogance and systemic failures that compound the suffering of already vulnerable children. Donna explains that the goal of the film is to educate doctors, empower advocates, and give a voice to families who have been ignored or harmed by the very system meant to help them.

Now, Donna is building a nonprofit and launching an impact campaign to bring Complicated into medical schools, hospitals, and advocacy groups. She encourages screenings, open discussions, and partnerships with institutions ready to learn and do better. With a background in journalism and a heart for change, she is pushing to make this a turning point in rare disease care.

References and Resources Mentioned:

• Complicated, produced by Open Eye Pictures (openeyepix.org)
  
  
  
• The documentary Take Care of Maya on Netflix
  
  
  
• Under Our Skin, directed by Andrew Abrahams
  
  
  
• Ehlers-Danlos Syndrome information (ehlers-danlos.com)
  
  
  
• Complex Regional Pain Syndrome resources (rsds.org)
  
  
  
• Postural Orthostatic Tachycardia Syndrome (dysautonomiainternational.org)
  
  
  
• Coalition Against Pediatric Pain (tcapp.org)
  
  
  
• Connective Tissue Coalition
  
  
  
• Pathways to Trust
  
  
  
• Pharmacogenetics in pain medicine
  
  
  

For screenings or to support the mission, visit openeyepix.org and reach out through the contact page.

In this insightful interview, Andrew Gill, LPC, shares his unique approach to counseling clients with chronic pain, emphasizing the profound intersection between physical suffering and mental health. Drawing from years of experience, Gill highlights how anxiety, depression, and even trauma often accompany long-term physical pain, especially in patients navigating fragmented and impersonal medical systems. He advocates for a holistic framework that includes somatic therapy, mindfulness, and motivational interviewing—tools designed to address not just a client’s thoughts but their embodied emotional experience. His approach encourages clients to reconnect with their bodies, unpack self-critical narratives, and build compassionate self-awareness that fosters healing.

Gill also speaks candidly about how he handles the emotional toll of working with chronically ill clients, emphasizing the importance of boundaries and self-care for both therapists and advocates. He stresses that clinicians and patient advocates alike must learn to be “responsible to” clients, not “responsible for” them—an essential mindset when dealing with cases involving complex emotional and medical dynamics. With humility and clarity, he offers practical advice on how to assess clients’ needs, advocate effectively within disjointed healthcare systems, and preserve one’s own emotional well-being in the process. His commitment to serving underrepresented populations, including those on Medicaid, reflects his deeply rooted values and the belief that healing is not only possible but also a communal responsibility.

***Resources & Links Mentioned

Andrew Gill’s Contact Info:
 🔗 Website: www.tauhealingservices.com
📧 Email: [email protected]

***Therapy & Clinical Resources Mentioned

Motivational Interviewing
 Developed by Dr. William R. Miller — a client-centered, directive method for enhancing intrinsic motivation to change.

Somatic Therapy
 Body-focused therapeutic approach addressing the mind-body connection in trauma and chronic pain.

Cognitive Behavioral Therapy (CBT)
 Traditional cognitive model often used as a baseline contrast to somatic and integrative approaches.

Emotion-Focused Therapy (EFT)
 Mentioned as a component within some CBT frameworks; emotion-centered work in psychotherapy.

Mindfulness & Body Scanning
 Practices to reconnect with the physical self and build emotional regulation.

***Books & Authors Referenced:

“The Body Keeps the Score” by Bessel van der Kolk
 Seminal work on trauma, memory, and somatic healing.

“Boundaries” by Dr. Henry Cloud & Dr. John Townsend
 Recommended for advocates and clinicians navigating emotional limits in caregiving roles.

Edith Stein (St. Teresa Benedicta of the Cross)
 Referenced for her writings on empathy and embodiment in therapeutic relationships.

***Clinical Directories & Tools:

Psychology Today Therapist Directory
 www.psychologytoday.com
Use filters to find therapists who specialize in chronic pain, trauma, and who accept Medicaid or specific insurance.

 Dr. Linda Bluestein shares her extraordinary medical and personal journey through the underrecognized world of connective tissue disorders, particularly hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD). Initially trained as an anesthesiologist, Dr. Bluestein faced a lifetime of unexplained symptoms—ranging from joint pain and allergies to abdominal issues and severe fatigue—before being properly diagnosed in her 40s. After experiencing medical gaslighting and dismissiveness, even as a physician herself, she finally received clarity and validation from a thorough and compassionate rheumatologist. That turning point led her to launch Hypermobility MD, a specialized clinic dedicated to patients with connective tissue disorders.

Throughout the interview, Dr. Bluestein explains what hypermobility is, how it can present both as benign flexibility and as a disabling multi-systemic condition. She demystifies common tools like the Beighton score and five-point questionnaire, and clarifies why many patients are missed under current diagnostic criteria. She also outlines the broader symptoms—GI issues, mast cell activation, fatigue, and pain—that often go unrecognized and misattributed. Her clinic offers in-depth assessments and long appointments that are not possible in traditional insurance-based practices.

In addition to her medical clinic, Dr. Bluestein runs a virtual coaching business through Bendy Bodies, where she helps clients worldwide understand their conditions, arm themselves with the right questions for their doctors, and access targeted resources including supplements and treatment suggestions. Her podcast, also called Bendy Bodies, features over 150 episodes of interviews with experts across gynecology, gastroenterology, physical therapy, and pain neuroscience. Dr. Bluestein’s goal is clear: to bring awareness, empowerment, and practical strategies to the millions suffering silently from connective tissue disorders, many of whom have been dismissed, misdiagnosed, or traumatized by the healthcare system.

***Resources & Links Mentioned
 www.hypermobilitymd.com
www.bendybodiespodcast.com
www.hypermobilitymd.substack.com
Coaching and one-on-one education available via Services tab on www.hypermobilitymd.com

***Medical Tools & Concepts Explained
 Beighton Score – A nine-point physical exam for assessing joint hypermobility
 Five Point Questionnaire – A simple screening tool capturing hypermobility symptoms from youth to adulthood
 Hypermobile Ehlers-Danlos Syndrome (hEDS) – A connective tissue disorder affecting joint stability, skin elasticity, and other body systems
 Hypermobility Spectrum Disorders (HSD) – A group of disorders related to joint hypermobility without meeting full criteria for hEDS
 Tarlov Cyst – A fluid-filled sac affecting the nerves in the spinal cord, more common in patients with connective tissue disorders
 Mast Cell Activation – An immune response issue often comorbid with EDS that contributes to allergies, GI symptoms, and sensitivities
 Complex Regional Pain Syndrome (CRPS) – A chronic pain condition that arose post-surgery for Dr. Bluestein, shifting her career toward advocacy

***Clinics, Practices, & Coaching
 Hypermobility MD – Dr. Bluestein’s out-of-pocket medical practice offering extended diagnostic visits and treatment plans for connective tissue disorders
 Bendy Bodies Coaching – Virtual, educational coaching sessions for clients worldwide who are unable to travel to her clinic

In this episode, Shelbey Arevalo shares her powerful mission as a national dental advocate and consultant. She has spent over 15 years in the dental industry and now dedicates herself to bridging the communication and access gap between patients and dental providers. Through her nonprofit, National Dental Advocacy, she offers services that include virtual consultations, billing and coding support, and direct advocacy in complex dental cases.

Shelbey explains how misunderstandings between providers and patients often arise from poorly trained support staff or unclear communication, not from any lack of care by the dentists themselves. She emphasizes her commitment to unbiased advocacy, helping patients navigate billing questions, treatment plans, and provider searches with full transparency.

Her unique position as both a certified patient advocate and a dental billing expert allows her to improve outcomes for both parties. From assisting patients virtually at appointments to working with mobile dentistry providers in California, Shelbey’s work is deeply personal and passionately executed. She hopes to scale the nonprofit, train new advocates, and create a fully funded, nationwide service model.

The conversation closes with advice for patients: assume good intentions, ask questions, and know your dentist likely cares more than you think.

Resources Mentioned:
Website: https://www.nationaldentaladvocacy.org
Phone: 707-ASK-NDAP
American Dental Association courses: https://www.ada.org
Sleep apnea and cross-coding billing training

Kristen Miller is a healthcare delivery researcher with nearly two decades of experience working with MedStar Health. Her work focuses on improving how care is delivered across all phases of the patient journey, from preparation before appointments to follow-up after visits. Unlike traditional bench science, her research emphasizes real-world tools and systems designed to help providers and patients make safer, more informed decisions.

She emphasizes the importance of tools tailored to various stages of care: pre-encounter preparation, in-visit communication, and post-visit follow-up. Her team is working on simple, accessible aids, such as cue cards and checklists, to help patients describe symptoms more effectively. She also highlighted the widespread issue of diagnostic errors, noting that one in 20 people will experience one in primary care annually, and that all patients are likely to face at least one in their lifetime.

Kristen Miller is a fantastic presenter. She has appeared live at numerous conferences, including PULSE’s Pulse's Family-Centered Patient Advocacy Training New York this past March. 

Resources Mentioned in the Podcast:

• Be the Expert on You (tool from MedStar and AHRQ)
• PatientPartneredDCE.org
• ECRI Top 10 Patient Safety Concerns
• ChatGPT (mentioned in context of AI usage)

Timestamps of Important Moments in the Podcast:
 00:51 Kristen explains her focus on healthcare delivery research
 03:27 Description of clinical decision support tools for providers
 06:14 The evolution of risk tools from provider to patient use
 08:28 Kristen discusses medical gaslighting and patient dismissal
 12:55 Diagnostic errors in primary care and patient lifetime risk
 14:56 “Be the Expert on You” tool and symptom description training
 17:32 Adapting patient tools to different needs and health literacy
 21:31 Empowerment during the encounter, not just preparation
 25:14 Discussion on types of AI tools and patient trust
 31:53 Diagnostic safety as a core focus of medical care
 35:03 Misdiagnosis of cardiovascular disease in women
 38:47 Challenges of provider pattern recognition and AI comparison
 39:56 PatientPartneredDCE.org and ways for advocates to participate
 41:40 From patient education to full diagnostic empowerment

In this compelling interview, Kayla Thompson-Riviere, RN and Board Certified Patient Advocate, shares her journey from burned-out ICU nurse to the first and only independent advocate on Maryland’s Eastern Shore. Confronted with the confusion surrounding the term "patient advocate"—often associated with hospital employees or free services—Kayla rebranded herself as a personal medical strategist. The new title not only clarifies her role but also subtly signals a paid, professional service. With deep roots in critical care, Kayla explains how her strategic, pattern-based approach to advocacy helps clients who are undiagnosed, misdiagnosed, or dismissed by their medical teams. Her Medical Roadmap service includes a 90-minute intake session, a written action plan, and a follow-up call—all for a flat fee—bringing much-needed clarity and predictability to a broken, opaque healthcare system.

Kayla also speaks candidly about the personal heartbreak that pushed her toward advocacy: the traumatic loss of her daughter due to medical mismanagement during pregnancy. That experience became the fire behind Heard for Life, her advocacy practice whose acronym stands for Health Empowerment through Advocacy for Patients’ Rights and Dignities. Rather than focus solely on “done-for-you” services, Kayla leans into a “done-with-you” model that empowers blue-collar, DIY-minded patients to take action with strategic support. From offering flexible follow-up plans to partnering with billing advocates, she has created a scalable, transparent, and highly personalized care model that resonates with clients and fills a major gap in healthcare.

***Resources & Links Mentioned
 www.heardforlife.com
www.heardforlife.com/guide

***Advocacy Services & Frameworks Mentioned
 Personal Medical Strategist – Kayla’s professional title reflecting a paid, strategic approach to navigating complex care
 Medical Roadmap – A flat-fee service that includes a 90-minute Zoom intake session, written action plan, and follow-up evaluation
 Flat Monthly Support – Optional ongoing strategy sessions with additional hourly services available as needed
 Flex-Up Hands-On Support – A scalable option for clients who need more direct involvement with tasks like insurance calls
 Heard for Life – Stands for Health Empowerment through Advocacy for Patients’ Rights and Dignities

***Free Tools & Downloads
 Doctor Appointment Strategy Guide – A free two-part resource available at www.heardforlife.com/guide that includes a downloadable PDF and a bonus strategy call with Kayla

***Business & Marketing Insights
 Kayla transitioned away from the term “independent patient advocate” due to public confusion and opted for “personal medical strategist” to better communicate her role and pricing
 Her core client base includes people who are undiagnosed, misdiagnosed, or feeling abandoned by the system—what she calls “medical misfits”
 Her model is designed to empower rather than enable, and her transparent flat-fee structure builds trust while offering flexibility based on each client’s needs

In this episode of Patient Advocacy Now, we sit down with Teri Frykenberg, a nationally recognized leader in patient advocacy and patient safety. With a background as an ICU nurse, a three-time author, a newspaper columnist, and a serial entrepreneur in the patient advocacy space, Teri brings a wealth of experience and insight into the evolving challenges of healthcare.

Teri shares her personal journey into patient advocacy, which began with a near-tragic medical emergency involving her own family. She explains how her frustration with hospital bureaucracy and mismanagement led her to leave nursing and start her own advocacy company, despite having no formal business background. She also addresses the growing demand for advocacy services through her training programs at NurseAdvocateEntrepreneur.com

If you're a nurse or doctor considering a shift into patient advocacy, or if you're interested in how to navigate the healthcare system more effectively, this episode is packed with invaluable insights from one of the foremost experts in the field.

In this thought-provoking episode of Patient Advocacy Now, we sit down with Nancy Ruffner, a trailblazer in patient advocacy and a passionate advocate for solo agers. Nancy shares her inspiring journey from social work to private patient advocacy, reflecting on how personal caregiving experiences shaped her mission to guide others through the complex healthcare system. 

With a sharp focus on aging without traditional caregivers, Nancy unpacks critical issues like medical missteps, legal planning, financial readiness, and the need for stronger community support. Along the way, she offers insights into the evolving role of technology, the challenges of navigating elder care, and the creative solutions that empower solo agers to thrive. 

Nancy Ruffner is a leader when it comes to advocating for and teaching about the needs of Solo Agers. As a professional with an intense and in-depth background about the needs of Aging Orphans, Nancy’s work involves incredible ethics and loyalty to her clients. Whether you're facing your own healthcare challenges or seeking to understand the broader implications of solo aging, Nancy’s wisdom and actionable advice make this episode a must-listen.

In this heartfelt episode of Patient Advocacy Now, Dr. Chris Price, a retired cardiologist turned patient advocate, shares his incredible journey of resilience, service, and transformation. Known for his calm demeanor during medical emergencies, Dr. Chris discusses how his health struggles, including autoimmune challenges, inspired him to deepen his commitment to patient advocacy.

Drawing from over two decades in cardiology, he offers a unique perspective on empowering patients, navigating the complexities of informed consent, and understanding one’s own body. Dr. Chris also highlights the systemic issues in healthcare, the critical role of advocacy, and his mission to make support more accessible to all.

After experiencing a health issue leading to his early retirement, Dr. Chris became even more interested in patient advocacy. He started his own business to continue this passion and serve others in Washington State and beyond. He received his MD from Creighton University School of Medicine and his BS from Santa Clara University. With warmth and wisdom, this episode sheds light on humanity in healthcare and how advocates like Dr. Chris bring clarity in times of crisis. 

Please join us and listen to this expansive interview with Dr. Chris and how his experiences led to his knowledge and contribution to the Independent Patient Advocacy profession.

In this powerful episode of Patient Advocacy Now, Lisa Berry Blackstock, founder of Soul Sherpa, shares her remarkable journey from estate administrator to trailblazing patient advocate. Lisa opens up about her personal battle with misdiagnosis and debilitating chronic pain, culminating in life-changing brain surgery that transformed her perspective on healthcare. 

Drawing from her legal and medical advocacy expertise, she discusses the importance of life care planning, navigating insurance battles, and advocating for patients dismissed by the system. 

As a graduate of Stanford University in 1982, Lisa uses her knowledge of the business and political factors that shape healthcare. Her attention to detail is unsurpassed, allowing her to often discover errors made in haste or overlooked by other professionals. The result is appropriate quality healthcare, satisfaction, and financial savings for her clients.  

Lisa's holistic approach connects the dots between healthcare, legal, and financial planning, ensuring clients receive comprehensive and compassionate support. Whether you’re a patient, caregiver, or professional, this episode offers invaluable insights into navigating healthcare's complexities with resilience and purpose.