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

summary

In this episode of Coffee and Community, the Cutaneous Lymphoma Foundation discusses the newly developed guidelines for pediatric cutaneous lymphoma with Professor Chalid Assaf. The conversation covers the importance of these guidelines, the unique presentation of cutaneous lymphoma in children, the development process of the guidelines, treatment strategies including the watch and wait approach, and the significance of ongoing research. The episode emphasizes the need for reassurance for parents and highlights the collaborative efforts in treating this rare disease.

To review and learn more about the guidelines please visit our website at Pediatric Guidelines for Mycosis Fungoides | Cutaneous Lymphoma Foundation

takeaways

• Guidelines are essential for doctors treating cutaneous lymphoma.
• Children present differently than adults with cutaneous lymphoma.
• The development of guidelines took about three and a half to four years.
• Watch and wait is a strategy integrated into treatment guidelines.
• Phototherapy is the first-line treatment for early-stage mycosis in children.
• Treatment duration for phototherapy is usually short, around three to six weeks.
• Ongoing research is crucial for understanding pediatric cutaneous lymphoma.
• Parents should be reassured about treatment possibilities and outcomes.
• Collaboration among experts is vital in rare disease treatment.
• The guidelines represent a significant step forward in pediatric care.

Chapters

00:00 Introduction to Cutaneous Lymphoma Guidelines

02:27 Understanding Pediatric Cutaneous Lymphoma

04:56 The Process of Developing Guidelines

07:24 Watch and Wait: A Careful Approach

09:50 Treatment Options for Pediatric Patients

12:27 Long-term Management and Prognosis

14:55 Future Research and Global Awareness

17:35 Final Thoughts and Community Support

summary

In this conversation, Dr. Steven Horwitz discusses the recent Lymphoma Research Foundation's T-Cell Workshop, emphasizing the importance of collaboration among experts in the field. The workshop aimed to address the unique challenges of T-cell Lymphomas including cutaneous lymphomas and explore advancements in research and therapy. Dr. Horwitz highlights the need for ongoing workshops, the significance of understanding the biology of T-cell lymphomas, and the role of the community in supporting research efforts. He expresses hope for future advancements and the importance of patient involvement in clinical trials and advocacy for rare diseases. The Cutaneous Lymphoma Foundation was proud partner bringing the cutaneous lymphoma sessions to the workshop.

takeaways

• The T-cell workshop aims to enhance collaboration among experts.
• Cutaneous lymphoma sessions were added to address specific needs.
• Future workshops are planned to continue the momentum.
• Understanding the biology of T-cell lymphomas is crucial for therapy development.
• International collaboration is essential for advancing research.
• Pathology and biology discussions are key to understanding T-cell lymphomas.
• New therapies are being explored based on biological insights.
• Community involvement is vital for research progress.
• Patients can contribute to advancing research.
• Advocacy for rare diseases is important for funding and support.

Chapters

00:00 Introduction to T-Cell Workshop

02:07 Understanding the T-Cell Workshop's Purpose

04:40 The Importance of Cutaneous Lymphoma Sessions

06:56 Future of T-Cell Workshops

09:10 Key Discussions and Learnings

11:31 Next Steps and Roadmap for Research

13:57 Patient Involvement and Community Support

16:34 Closing Thoughts and Future Directions

summary

In this episode, Harjeet K. shares her profound journey with cutaneous lymphoma, detailing her diagnosis, treatment, and the emotional challenges she faced. From navigating the healthcare system as an immigrant to advocating for awareness in the South Asian community, Harjeet's story is one of resilience and hope. She emphasizes the importance of communication, support networks, and breaking stigmas surrounding cancer, particularly in her cultural context. Harjeet also discusses the impact of her treatment on her fertility and mental health, highlighting the need for awareness and education in these areas.

takeaways

• Harjeet was diagnosed with stage four cutaneous lymphoma at age 32.
• The diagnosis process was lengthy and filled with uncertainty.
• Isolation during treatment was a significant emotional challenge.
• Harjeet's brother was a perfect match for her stem cell transplant.
• Communication about cancer is often lacking in the South Asian community.
• Harjeet created a Facebook support group called Chai and Hope for South Asian cancer patients. www.facebook.com/chaiandhope
• Advocacy for health awareness is crucial for patients and their families.
• Fertility issues and menopause are often overlooked in cancer treatment discussions.
• Harjeet emphasizes the importance of asking for help and support.
• Sharing her story has helped others feel less isolated in their cancer journeys.

Chapters

00:00 Introduction to Harjeet's Journey

01:12 The Diagnosis and Initial Struggles

03:27 Navigating Treatment and Family Dynamics

06:35 Stem Cell Transplant Decision

09:27 The Isolation of Treatment

13:56 Recovery and Reflection

16:35 Milestones and Gratitude

28:56 Navigating Silence and Isolation in Cancer Treatment

31:38 The Power of Sharing: Blogging and Community Support

35:19 Breaking Stigmas: Cancer Myths in the South Asian Community

37:38 Advocacy and Self-Advocacy in Healthcare

39:59 Understanding Early Menopause and Its Impact

40:15 Creating Community: Chai and Hope Initiative www.facebook.com/chaiandhope

summary
In this episode of Coffee and Community, host Holly Priebe speaks with Sabrina, a young adult living with cutaneous lymphoma. Sabrina shares her journey from misdiagnosis to advocacy, discussing the challenges she faced in navigating her diagnosis, treatment, and the importance of community support. She emphasizes the need for self-advocacy, the significance of finding a trusted physician, and the power of sharing experiences to inspire others. Sabrina's story is one of resilience, hope, and the drive to give back to the community that has supported her.

takeaways

• Sabrina was misdiagnosed for six to seven years before receiving the correct diagnosis of cutaneous T-cell lymphoma.
• Living with cutaneous lymphoma has taught Sabrina that it is a part of her but does not define her.
• Sabrina faced significant challenges in accessing treatment, including long commutes and delays in care.
• Family support has been crucial for Sabrina throughout her journey with lymphoma.
• Sabrina emphasizes the importance of self-advocacy in navigating the healthcare system.
• Finding a trusted physician is essential for managing chronic conditions like cutaneous lymphoma.
• Sabrina encourages others to allow themselves to feel their emotions and not always be positive.
• Community support has been vital for Sabrina, providing a space to share experiences and feelings.
• Sabrina actively gives back to the cutaneous lymphoma community through advocacy and fundraising.
• Sabrina believes everything happens for a reason and aims to inspire others facing similar challenges.

Chapters

00:00 Sabrina's Journey with Cutaneous Lymphoma
13:07 Navigating Treatment Challenges
22:23 Finding Community and Support
28:19 Advice for Newly Diagnosed Patients
32:47 The Importance of Advocacy and Giving Back

Summary

In this conversation, Sheila J shares her journey with cutaneous T-cell lymphoma, emphasizing the importance of patient advocacy, the power of information, and the need for community support. She discusses her experiences navigating the healthcare system, overcoming fear, and living successfully with her diagnosis. Sheila highlights the significance of building trust with healthcare providers and the role of knowledge in empowering patients to take control of their health. The conversation also touches on the importance of diet, mental health, and the impact of community in managing chronic illness.

As promised: to follow Sheila and her amazing cooking show please visit www.gangstagoodieskitchen.com

takeaways

• It's important to be your own advocate in healthcare.
• Building relationships with compassionate healthcare providers is crucial.
• Information empowers patients to make informed decisions.
• Fear can hinder seeking necessary medical help.
• Community support plays a vital role in coping with illness.
• Living successfully with a chronic condition is possible.
• Diet and lifestyle choices can impact health outcomes.
• Trust in healthcare is essential for effective treatment.
• Sharing experiences can help others navigate their journeys.
• Empowerment comes from knowledge and community engagement.

00:00 Introduction to Sheila's Journey with Cutaneous Lymphoma

01:26 The Diagnosis Journey: From Rash to Realization

05:42 Coping with the Diagnosis: Embracing Life

08:23 Treatment Decisions: Choosing an Aggressive Approach

13:33 Empowerment Through Knowledge: Advocating for Oneself

18:28 Lifestyle Changes: Nutrition and Wellness

18:29 Community Support: The Importance of Connection

20:08 Empowerment Through Advocacy

20:31 Connecting with Survivors

22:57 The Importance of Information

25:17 Giving Back to the Community

27:50 Addressing Misconceptions

30:08 Living Boldly with a Diagnosis