When Caring for Patients Comes at a Cost: The Complex Reality of Chronic Hand Eczema

When Caring for Patients Comes at a Cost: The Complex Reality of Chronic Hand Eczema

This episode is part of Amplify’s special three-part series on Chronic Hand Eczema, sponsored by LEO Pharma Canada [https://www.leo-pharma.ca/en-ca].  Across this series, we’ve explored Chronic Hand Eczema through three deeply connected perspectives: the lived experience of patients, the professional realities of healthcare workers, and the clinical understanding of a condition that is often underestimated.  In the first episode [https://patientvoicepartners.com/chronic-hand-eczema-a-nurses-story-of-pain-work-and-family/], Amy Wright shared what it is like to live with Chronic Hand Eczema — how painful, visible symptoms can affect everyday routines, family life, confidence, and emotional well-being. Her story reminded us that behind every diagnosis is a person navigating moments that others may not always see.  In the second episode [https://patientvoicepartners.com/more-than-skin-deep/], Marley Gregorio brought forward the healthcare worker perspective, highlighting how Chronic Hand Eczema can affect nurses and care providers whose hands are central to their work. From repeated handwashing and glove use to the emotional burden of struggling with symptoms while caring for others, her episode showed how this condition can become a serious workplace and quality-of-life issue.  In this final episode of the series, Dr. George Christodoulou [https://www.linkedin.com/in/gewow/] joins the conversation to connect these experiences to the broader clinical picture. He discusses why Chronic Hand Eczema can be difficult to manage, why early recognition matters, and how the condition can create barriers not only for patients, but also for healthcare professionals who are expected to continue caring for others while managing their own pain and discomfort.  Chronic Hand Eczema is often dismissed as “just a skin condition,” but for many people, it can be painful, persistent, visible, and life-altering. It can affect work, relationships, sleep, mental well-being, social participation, and a person’s ability to feel comfortable in their own skin.  Together, these three episodes highlight the complex reality of Chronic Hand Eczema: it is a patient experience, a healthcare worker issue, a clinical challenge, and an important conversation about awareness, support, and quality of life.  This final episode brings the series together by asking us to look more closely at the impact of Chronic Hand Eczema — especially when caring for patients comes at a cost.  In This Episode, We Discuss:  * Why Chronic Hand Eczema can be difficult to manage  * How symptoms can affect daily life, work, and emotional well-being  * The added burden for healthcare workers who rely on their hands every day  * Why early recognition and proper support are important  * How Chronic Hand Eczema can become a barrier to both receiving and providing care  * The importance of listening to patient and healthcare worker experiences  * Why greater awareness is needed to improve understanding and support  Episode Highlights  00:03:20 — Why Chronic Hand Eczema is complex to diagnose Dr. George Christodoulou explains why Chronic Hand Eczema can be difficult to identify, with different causes, triggers, and contributing factors.  00:06:28 — Common symptoms patients experience The conversation covers symptoms such as itching, pain, cracking, dryness, flaking, and how these can affect quality of life.  00:09:06 — When everyday actions become painful Dr. Christodoulou shares how cracked and irritated hands can make simple moments — like washing hands, holding food, or shaking someone’s hand — uncomfortable or painful.  00:10:52 — Why treatment is not always simple The episode explores why Chronic Hand Eczema often requires more than one approach, including managing inflammation, repairing the skin barrier, and addressing triggers.  00:14:30 — The impact on work and daily life Dr. Christodoulou discusses how Chronic Hand Eczema can affect a person’s ability to work, especially in jobs that involve frequent handwashing, irritants, or manual labor.  00:20:00 — Access to treatment across Canada Ursula outlines how drug approval and reimbursement pathways can influence whether patients are able to access treatment options.  00:24:53 — How coverage can shape care Dr. Christodoulou shares how insurance and affordability can affect which treatment options are available to patients.  00:29:30 — The long-term burden of chronic disease The conversation looks at how living with a chronic condition over time can affect work, relationships, mental health, and overall life opportunities.    Dr. George Christodoulou [https://www.linkedin.com/in/gewow/] is a board-certified dermatologist by the Royal College of Physicians and Surgeons of Canada and the American Board of Dermatology. He obtained his MD and completed his 5-year dermatology residency at McGill University, and then he went on to complete a Mini-MBA in Physician Business Leadership from the Schulich School of Business at York University. Dr. Christodoulou is fluent in English, French, and Greek. He practices general medical and surgical dermatology with an additional interest in cosmetic dermatology and clinical research. He primarily focuses inflammatory disorders, with a significant phototherapy practice, as well as skin cancer screening and treatment.  Links & Resources  * Patient Voice Partners [https://patientvoicepartners.com/%C2%A0]   * Canadian Association of Neonatal Nurses (CANN) [https://cann.ca/%C2%A0]  * LEO Pharma [https://www.leo-pharma.ca/en-ca] Canada  * CHE Nurses Report [https://caccn.ca/wp-content/uploads/2025/05/2025-04-Final-SDEL2406_CHE-Nurses-Survey-Whitepaper_612x792_EN_S04.pdf]  About This Special Series  This three-part Amplify series on Chronic Hand Eczema brings together the voices of Amy Wright, Marley Gregorio, and Dr. George Christodoulou.  Together, their conversations explore how Chronic Hand Eczema affects people physically, emotionally, professionally, and socially — and why it deserves greater recognition in both patient and healthcare conversations.  This special series is sponsored by LEO Pharma Canada [https://www.leo-pharma.ca/en-ca].    Medical Disclaimer:  The content shared on Amplify is for informational and educational purposes only.  Nothing discussed on this podcast—including stories, experiences, perspectives, or commentary from hosts, guests, or contributors—should be interpreted as medical advice, diagnosis, or treatment recommendations.  Always seek the guidance of your physician or other licensed provider with any questions regarding your health, medical conditions, or treatment options.

More Than Skin Deep: The Unseen Impact of Chronic Hand Eczema on Nurses at Work

Sponsor Acknowledgment This episode is sponsored by LEO Pharma [https://www.leo-pharma.ca/en-ca]. LEO Pharma is a global research-based pharmaceutical company dedicated to advancing the standard of care for people living with skin conditions, their families, and society. Sponsorship helps support the Amplify podcast, but the conversation, perspectives, and final content are produced independently by Patient Voice Partners and its guests. We thank LEO Pharma for supporting conversations that elevate patient experiences and increase awareness of chronic skin conditions. Episode Summary Living with Chronic Hand Eczema is about far more than dry or irritated skin. For many people, it affects their work, sleep, confidence, relationships, and overall quality of life. In this episode of Amplify, hosts Ursula Mann and Anne Marie speak with Marley Gregorio, critical care nurse, nursing researcher, and Vice President of the Canadian Association of Critical Care Nurses (CACCN) [https://caccn.ca/about-caccn/], about the often-overlooked realities of Chronic Hand Eczema among healthcare professionals. Marley shares insights from national nursing research highlighting the significant burden Chronic Hand Eczema places on healthcare workers. The conversation explores the physical pain of repeated hand washing, the emotional toll of stigma and embarrassment, barriers to diagnosis and treatment, and the difficult decisions some nurses face when symptoms impact their ability to work. The discussion also highlights the importance of empathy, awareness, and understanding different lived experiences. Many people living with Chronic Hand Eczema feel isolated, but as Marley reminds us, they are not alone. Through advocacy, education, and continued research, there is hope for better recognition, better support, and better outcomes. In this episode, you'll learn: * Why healthcare workers face a higher risk of Chronic Hand Eczema * The hidden impact of Chronic Hand Eczema on daily life, mental health, and self-confidence * How stigma and assumptions can affect people living with visible skin conditions * Why early diagnosis, education, and workplace support matter * The importance of listening to different perspectives and lived experiences * How advocacy and research are helping drive change across healthcare systems * Why hope, community, and awareness are essential for improving care If you or someone you know is living with Chronic Hand Eczema, this conversation is a reminder that support exists, your experiences matter, and you are not alone. This episode is sponsored by LEO Pharma. Links & Resources  * Patient Voice Partners [http://patientvoicepartners.com/] * Canadian Association of Neonatal Nurses (CANN) [https://caccn.ca/about-caccn/] * LEO Pharma [https://www.leo-pharma.ca/en-ca] * CHE Nurses Report [https://caccn.ca/wp-content/uploads/2025/05/2025-04-Final-SDEL2406_CHE-Nurses-Survey-Whitepaper_612x792_EN_S04.pdf] Marley Gregorio Marley is a critical care nurse who works in a large acute care and academic hospital in Southwestern Ontario. She also is the Vice President of the Canadian Association of Critical Care Nurses (CACCN) and a first year PhD student in Nursing at the University of Ottawa. She is passionate about education, research and advocacy within nursing. Medical Disclaimer: The content shared on Amplify is for informational and educational purposes only. Nothing discussed on this podcast—including stories, experiences, perspectives, or commentary from hosts, guests, or contributors—should be interpreted as medical advice, diagnosis, or treatment recommendations. Always seek the guidance of your physician or other licensed provider with any questions regarding your health, medical conditions, or treatment options.

Chronic Hand Eczema: A Nurse’s Story of Pain, Work, and Family

Sponsor Acknowledgment  This episode is sponsored by LEO Pharma [https://www.leo-pharma.ca/en-ca]. LEO Pharma is a global research-based pharmaceutical company dedicated to advancing the standard of care for people living with skin conditions, their families, and society. Sponsorship helps support the Amplify podcast, but the conversation, perspectives, and final content are produced independently by Patient Voice Partners and its guests. We thank LEO Pharma for supporting conversations that elevate patient experiences and increase awareness of chronic skin conditions.   Episode Summary  What happens when the very hands you rely on for work, caregiving, and everyday life become a source of pain?  In this episode of Amplify, Amy Wright [https://www.linkedin.com/in/amy-l-wright-ab065199/]shares her personal journey living with chronic hand eczema while working as a neonatal nurse practitioner and raising two young children. Amy opens up about the physical discomfort, emotional impact, workplace challenges, and advocacy efforts surrounding this often misunderstood condition.  From delayed diagnosis and painful flare-ups to navigating triggers and advocating for safer workplace products, Amy offers an honest look at the realities of living with chronic hand eczema and why greater awareness, prevention, and support are urgently needed.    Episode Highlights  03:23 – Amy shares when she first noticed something was wrong and how her symptoms began during an international trip.  05:13 – How the pandemic dramatically worsened her condition through constant handwashing and disinfectant exposure.  08:34 – The long road to diagnosis and the frustration of limited treatment options.  10:22 – What Amy learned from patient communities that she didn't learn in the healthcare system.  14:28 – The physical symptoms of chronic hand eczema—and why it's much more than "just dry skin."  16:20 – The emotional impact of visible skin conditions, including embarrassment, stigma, and everyday interactions.  17:37 – A mother's perspective: when chronic hand eczema affects the simple act of touching your children.  20:22 – How everyday products, from soap to shampoo, can become unexpected challenges.  24:15 – The reality of managing chronic hand eczema while raising young children.  28:25 – What coworkers, employers, and healthcare organizations can do to better support those living with the condition.  31:24 – Amy discusses advocacy efforts aimed at improving workplace safety and awareness.  35:29 – The hidden economic burden of chronic hand eczema on individuals and healthcare systems.  38:40 – Amy shares what she's most looking forward to outside of work and advocacy.    Links & Resources  * Patient Voice Partners [https://patientvoicepartners.com/] https://patientvoicepartners.com/  * LEO Pharma [https://www.leo-pharma.ca/en-ca] https://www.leo-pharma.ca/en-ca * Canadian Association of Neonatal Nurses (CANN) [https://cann.ca/] https://cann.ca/  * CHE Nurses' Report [https://caccn.ca/wp-content/uploads/2025/05/2025-04-Final-SDEL2406_CHE-Nurses-Survey-Whitepaper_612x792_EN_S04.pdf] https://caccn.ca/wp-content/uploads/2025/05/2025-04-Final-SDEL2406_CHE-Nurses-Survey-Whitepaper_612x792_EN_S04.pdf Dr. Amy Wright, RN, PhD, NP-Pediatrics, NCC-BC [https://www.linkedin.com/in/amy-l-wright-ab065199/], is a distinguished leader in neonatal nursing and an acclaimed researcher dedicated to advancing health equity and cultural safety. As an Assistant Professor at the Lawrence Bloomberg Faculty of Nursing, University of Toronto, she bridges the gap between high-level academia and frontline clinical excellence.  Dr. Wright’s program of research, funded by the CIHR and SSHRC, focuses on the experiences and needs of Indigenous parents with young children. Her work is deeply rooted in community-engaged approaches, advocating for Trauma- and Violence-Informed Care (TVIC) and the elimination of structural barriers within the healthcare system. Clinically, she maintains an active practice as a Neonatal Nurse Practitioner in the NICU at McMaster Children’s Hospital, ensuring her research remains grounded in the realities of patient and family care.  A tireless advocate for the profession, Dr. Wright serves as the President of the Canadian Association of Neonatal Nurses (CANN) . Her contributions have been recognized nationally, including being named one of the "150 Nurses for Canada" by the Canadian Nurses Association, solidifying her reputation as a pivotal voice in neonatal health and advocate for Indigenous cultural safety.   Medical Disclaimer: The content shared on Amplify is for informational and educational purposes only. Nothing discussed on this podcast—including stories, experiences, perspectives, or commentary from hosts, guests, or contributors—should be interpreted as medical advice, diagnosis, or treatment recommendations. Always seek the guidance of your physician or other licensed provider with any questions regarding your health, medical conditions, or treatment options.

Beyond Accommodation: Building Workplaces Where Everyone Can Thrive

Episode Summary What happens when lived experience becomes a catalyst for systemic change? In this episode of Amplify, Ursula Mann and Anne-Marie sit down with accessibility consultant, speaker, entrepreneur, and founder of Accessible Creates, Sydney Elaine Butler. Sydney shares her personal journey growing up as an autistic, biracial woman navigating healthcare, education, and the workplace while learning to advocate for herself in systems that were not always designed with inclusion in mind. From childhood experiences with speech therapy and physiotherapy to becoming an award-winning HR leader and accessibility advocate, Sydney reflects on how her experiences shaped her passion for creating more inclusive workplaces and human-centered systems. The conversation explores disability, neurodiversity, self-advocacy, racial identity, workplace accommodations, hiring practices, and what organizations can do to move beyond compliance toward true inclusion. This thoughtful discussion offers practical insights for employers, leaders, caregivers, and anyone interested in creating environments where people can bring their full selves to work and thrive. Why You Should Listen * Learn how lived experience can drive meaningful change in healthcare and workplace systems. * Hear Sydney's inspiring journey from childhood speech therapy to becoming a recognized HR leader and speaker. * Understand the realities of self-advocacy for people navigating disability, neurodiversity, and healthcare systems. * Discover common gaps between organizational intentions and truly inclusive workplace practices. * Gain practical strategies for improving accessibility, accommodations, recruitment, and employee engagement. * Explore how flexibility and psychological safety can unlock innovation and better outcomes for everyone. Episode Highlights * 02:52 – Sydney shares her early experiences with autism, speech therapy, physiotherapy, and navigating healthcare as a child. * 04:30 – Lessons in self-advocacy from her mother and how those skills shaped her life and career. * 05:58 – What Sydney wishes someone had told her during difficult moments growing up. * 07:08 – Reflecting on progress, resilience, and the powerful "love letter" she would write to her younger self. * 08:30 – From speech therapy challenges to presenting on stage at the Canadian HR Awards. * 09:54 – How a passion for helping people led Sydney into a career in Human Resources. * 11:24 – Navigating healthcare as a biracial woman and the importance of being heard. * 12:23 – A simple but meaningful lesson in self-advocacy during a medical procedure. * 13:52 – Why "being louder" often means persistently ensuring your voice is heard. * 15:20 – The impact of racial bias and assumptions in healthcare settings. * 17:28 – Why patient voices matter and how collective advocacy creates change. * 17:58 – Advice for parents on teaching children to advocate for themselves. * 20:23 – Understanding autism, neurodiversity, masking, and self-acceptance. * 24:09 – The gap between organizational intentions and truly inclusive workplaces. * 26:06 – Why accessibility legislation is only the beginning, not the destination. * 27:34 – The importance of standardizing inclusive practices across organizations. * 28:30 – How diverse ways of thinking create opportunities for innovation. * 29:00 – Rethinking accommodations and supporting people through changing needs. * 30:57 – Practical steps organizations can take to better listen to employees. * 32:22 – Why employee silence is not always a sign that everything is working. * 33:19 – Embracing mistakes, learning, and building stronger leadership. * 34:16 – Making hiring and interview processes more accessible and inclusive. * 37:41 – Sydney shares how she recharges through nature walks and time with her dog, Oreo. Links * Accessible Creates: https://www.accessiblecreates.ca/ [https://www.accessiblecreates.ca/] * Connect with Sydney Elaine Butler: https://www.linkedin.com/in/sydney-elaine-butler/ [https://www.linkedin.com/in/sydney-elaine-butler/] Medical Disclaimer: The content shared on Amplify is for informational and educational purposes only. Nothing discussed on this podcast—including stories, experiences, perspectives, or commentary from hosts, guests, or contributors—should be interpreted as medical advice, diagnosis, or treatment recommendations. Always seek the guidance of your physician or other licensed provider with any questions regarding your health, medical conditions, or treatment options.

From Caregiver to Changemaker: Transforming Rare Disease Advocacy Through Policy

Episode Summary What does it take to turn personal caregiving experience into lasting healthcare change? In this episode of Amplify: Elevating Patient Voices, Ursula Mann and co-host Barry Liden welcome Annie Kennedy, Chief Mission Officer of the EveryLife Foundation for Rare Diseases and one of the leading voices in rare disease advocacy and policy. Annie shares her journey from aspiring physician to caregiver after a loved one was diagnosed with an ultra-rare and aggressive cancer. That experience exposed the gaps in healthcare systems for rare disease patients and families, inspiring her to dedicate her career to advocacy and policy change. The conversation explores the evolution of rare disease advocacy, the creation of patient-centered policies, the importance of patient experience data, and how caregivers and patient communities can influence decisions that shape research, clinical trials, regulatory reviews, and access to treatments. Annie also discusses the work of the EveryLife Foundation and why empowering patients and caregivers to engage in advocacy remains essential for driving meaningful change. Why You Should Listen If you are a patient, caregiver, advocate, healthcare professional, policymaker, or anyone interested in how healthcare systems evolve, this episode offers valuable insights into how real-world experiences can influence national policy and improve outcomes for entire communities. You'll learn: * How caregiving experiences can become catalysts for large-scale change * Why rare disease communities have led many of the advances in patient-centered healthcare * What patient experience data is and why it matters * How advocacy efforts helped shape the 21st Century Cures Act * Why collaboration between patients, advocates, researchers, industry, and regulators is critical * How individuals can become effective advocates regardless of their background Episode Highlights 04:16 – Annie shares how a loved one's rare cancer diagnosis changed her career path from medicine to caregiving and advocacy. 07:49 – Discovering that many rare disease families weren't facing a broken system—but a system that simply didn't exist. 10:38 – Annie's advice to caregivers: give yourself grace and permission to learn as you go. 12:36 – The mindset that fueled her advocacy work: "It's our table." 14:34 – How Annie helped introduce advocacy efforts within the Muscular Dystrophy Association. 17:23 – The origins of patient-focused drug development and efforts to ensure patient voices influence regulatory decisions. 18:48 – How the Patient-Focused Impact Assessment Act became part of the 21st Century Cures Act. 19:44 – What patient experience data means and why it plays a critical role in healthcare decision-making. 22:37 – Annie explains patient preference studies and how they help determine meaningful treatment benefits and acceptable risks. 25:14 – The mission of the EveryLife Foundation and its work to advance evidence-based rare disease policy. 27:36 – Findings from the National Economic Burden of Rare Disease Study and what they reveal about the financial realities faced by families. 29:33 – Annie reflects on the accomplishments she's most proud of, including developing future generations of patient advocates. 31:17 – A personal glimpse into life outside advocacy as Annie shares what it's like being the mom of a teenager preparing for college. Links * Learn more about EveryLife Foundation for Rare Diseases https://everylifefoundation.org/ [https://everylifefoundation.org/] * Learn more about Patient Voice Partners https://patientvoicepartners.com/ [https://patientvoicepartners.com/] * Connect with Patient Voice Partners on LinkedIn https://www.linkedin.com/company/patient-voice-partners/ [https://www.linkedin.com/company/patient-voice-partners/] * Listen to more Amplify episodes https://patientvoicepartners.com/podcast/ [https://patientvoicepartners.com/podcast/] * Interested in sharing your story or becoming a guest? https://patientvoicepartners.com/contact/ [https://patientvoicepartners.com/contact/] Medical Disclaimer: The content shared on Amplify is for informational and educational purposes only. Nothing discussed on this podcast—including stories, experiences, perspectives, or commentary from hosts, guests, or contributors—should be interpreted as medical advice, diagnosis, or treatment recommendations. Always seek the guidance of your physician or other licensed provider with any questions regarding your health, medical conditions, or treatment options.