This episode features Dr. Frank Buono, an Associate Research Scientist and Lecturer at the Yale School of Medicine, discussing his research on utilizing digital technologies to assist with treatment for individuals with rare diseases like neurofibromatosis (NF), with a focus on managing chronic pain. Dr. Buono talks about his latest project, a mobile app called 'I Can Cope-NF' designed for chronic pain management in NF1 adults, its development process, preliminary positive results from a study conducted in 2022, and future plans for public release after ongoing trials. The conversation also touches on different aspects of chronic pain, including its psychological effects, various pain management strategies beyond pharmacological treatments (like cognitive behavioral therapy, mindfulness, physical therapy), and the importance of a multidisciplinary approach and community support for patients. Dr. Buono emphasizes the significance of self-advocacy, exploring alternative treatments, and the potential of digital tools to provide accessible care options for those with limited resources.

02:12 Understanding Chronic Pain in Neurofibromatosis
03:38 Exploring Alternative Pain Management Strategies
21:51 'I Can Cope NF' App for Chronic Pain
30:25 Towards a Holistic Approach in Pain Management
32:35 Exploring the Psychological Aspects of Chronic Pain
33:32 The Interconnection of Chronic Pain, Depression, and Anxiety
35:08 Effective Psychological and Physical Therapies for Chronic Pain
36:35 Personal Insights and the Power of Movement in Pain Management
40:27 The Challenge of Trying New Therapies and the Importance of Persistence
43:41 Highlighting the Role of Community and Self-Help Resources
50:23 Advocacy, Support Networks, and the Journey of Living with NF
56:26 Closing Thoughts and the Importance of Resource Accessibility

Dr. Buono alluded to several books during the interview, here are some of the titles he'd like to highlight:
Get Out of Your Mind and Into Your Life: The New Acceptance and Commitment Therapy by Steven C Hayes, PhD
The Chronic Pain and Illness Workbook for Teens: CBT and Mindfulness-Based Practices to Turn the Volume Down on Pain by Rachel Zoffness, PhD
The Pain Management Workbook: Powerful CBT and Mindfulness Skills to Take Control of Pain and Reclaim Your Life by Rachel Zoffness, PhD
The Mindful Self-Compassion Workbook: A Proven Way to Accept Yourself, Build Inner Strength, and Thrive by Kristin Neff PhD and Christopher Germer, PhD

In addition, he wanted to link to several organizations:
Children's Tumor Foundation
NF Network
Pubmed

• Waz
• Annette B.
• Brianna W
• Rosemary Anderson