summary
In this episode of Coffee and Community, Rich shares his personal journey with cutaneous lymphoma, detailing his diagnosis, treatment options, and the importance of building a support system. He emphasizes the need for realistic expectations regarding the disease, the impact of treatment on daily life, and the significance of mental health. Rich also offers valuable advice for newly diagnosed patients, encouraging them to seek help and stay engaged in their lives despite the challenges of a chronic illness.

takeaways

• The importance of having a dedicated healthcare team for managing cutaneous lymphoma.
• Understanding that cutaneous T-cell lymphoma is a chronic disease, not necessarily curable.
• The significance of managing expectations regarding treatment and remission.
• Rich emphasizes the need for mental health support during treatment.
• Planning for life events is crucial for maintaining mental well-being.
• Building a support system is essential for coping with chronic illness.
• Rich advocates for being proactive in seeking help and support.
• Engaging in advocacy can provide a sense of purpose and community.
• Finding joy in life outside of the diagnosis is vital for overall health.

Chapters

00:00 Introduction to Rich's Journey

01:06 Rich's Diagnosis and Initial Treatment

04:06 Understanding Cutaneous T-Cell Lymphoma

07:38 Navigating Treatment Options

09:09 Impact of Diagnosis on Daily Life

16:48 Planning for Life Beyond Treatment

21:18 The Importance of Mental Health

22:47 Building a Support System

28:22 Advice for Newly Diagnosed Patients

35:19 Advocacy and Giving Back

Summary
In this episode of Coffee and Community, Scott shares his personal journey with cutaneous lymphoma, detailing his diagnosis, treatment, and the emotional impact of living with a chronic condition. He discusses the importance of finding specialists, managing family life, and the support he found through the Cutaneous Lymphoma Foundation. Scott emphasizes the need for self-advocacy and the value of community in navigating the challenges of lymphoma.

Takeaways

• Scott's journey with cutaneous lymphoma began with a surprising diagnosis.
• Understanding cutaneous lymphoma can be challenging for both patients and their families.
• The emotional impact of living with a chronic condition is significant.
• Finding a specialist can provide confidence and clarity in treatment options.
• Managing family life while dealing with a health diagnosis is complex.
• Support groups and community resources are invaluable for patients.
• Self-advocacy is crucial in navigating healthcare systems.
• Misconceptions about skin cancer can lead to misunderstandings about lymphoma.
• Living with cutaneous lymphoma requires ongoing education and awareness.

Chapters

00:00 Introduction to Cutaneous Lymphoma Journey

00:58 Scott's Unique Diagnosis Experience

03:05 Navigating Treatment and Recurrences

12:45 Balancing Family Life with Health Challenges

16:44 Finding Support and Community

18:45 Advice for Newly Diagnosed Patients

20:52 Misconceptions About Cutaneous Lymphoma

24:08 Importance of Sharing Stories and Advocacy

summary
In this episode of Coffee and Community, host Holly Priebe speaks with Allison Fitzgerald, Director of Operations for GlobalSkin, about the GRIDD and PRIDD projects aimed at improving quality of life for individuals living with skin diseases, including cutaneous lymphoma. They discuss the importance of patient-centric data, the development of an app for tracking the impact of skin diseases, and the future plans for research and advocacy. The conversation also addresses patient privacy concerns and the significant role of mental health in managing skin conditions.

• To learn more about the CLFoundation's participation in GlobalSkin's GRIDD & PRIDD projects please visit our website at GlobalSkin | Cutaneous Lymphoma Foundation
• To review the seven publications produced and published by GlobalSkin visit their website at Resources & Publications
• To download and begin using the PRIDD app visit the PRIDD website at Download App | PRIDD

takeaways

• Global Skin aims to turn qualitative data into quantitative data.
• The GRIDD project focuses on understanding the burden of dermatological diseases.
• PRIDD is a new measure that includes patient input.
• Patients need to communicate their full experience beyond physical symptoms.
• The PRIDD app allows patients to track their health and discuss it with providers.
• Healthcare providers need to be educated about the PRIDD app.
• Future research will utilize GRIDD and PRIDD data for advocacy.
• Mental health is a significant concern for patients with skin diseases.
• Patient participation in research is crucial for meaningful outcomes.
• Data security and privacy are prioritized in the app's design.

Chapters

00:00 Introduction to Global Skin and GRID Projects

03:00 Understanding PRIDD and Its Importance

05:04 Using the PRIDD App for Patient Empowerment

07:53 Healthcare Provider Engagement and Education

11:31 Future Plans for Global Skin and GRID

14:24 Patient Privacy and Data Security Concerns

18:52 The Importance of Research Participation

22:02 Mental Health and the Burden of Skin Disease