Copper & Clarity: Conversations About Wilson Disease

Host Rhonda Rowland, President of the Wilson Disease Association, explores the realities of life impacted by Wilson disease with guests Jean Marie and Kim. Jean Marie was diagnosed with Wilson disease at age 16, and Kim is mom and caregiver to her son James, who needs 24/7 support.  

Key topics: 

Invisible and visible symptoms of Wilson disease (5:28) 

Challenges of living with Wilson (9:35) 

The impact on social relationships (14:41) 

Centers of Excellence (16:28) 

Practicing self-care (19:29) 

Brain fog and fatigue with Wilson disease (23:31) 

The Spoon Theory (27:45) 

Advice to others (31:39) 

Positive aspects of life with Wilson disease (35:26) 

For more information about Wilson disease, to find resources, and to see upcoming community events, visit wilsondisease.org.  

This podcast is created by Orphalan (orphalan.com) with collaboration from the Wilson Disease Association. Podcasts are for information only and do not constitute medical advice. This episode is intended for a U.S. adult audience.  

Host Rhonda Rowland, President of the Wilson Disease Association, explores the journey to a Wilson disease diagnosis with Dr. Michael Schilsky, a hepatologist from the Yale New Haven Transplantation Center, and Danette, a person living with Wilson disease.

Key topics:

What is Wilson disease (03:15)

The role of copper in the body (08:12)

A visible sign of Wilson disease in the eyes (11:39)

Tests that lead to a Wilson diagnosis (14:51)

Centers of Excellence (18:00)

Danette's first signs and symptoms (21:46)

The journey through multiple doctors (27:22)

Relief in diagnosis and advice for others (39:39)

For more information about Wilson disease, to find resources, and to see upcoming community events, visit wilsondisease.org.

This podcast is created by Orphalan (orphalan.com) with collaboration from the Wilson Disease Association. Podcasts are for information only and do not constitute medical advice. This episode is intended for a U.S. adult audience.