Managing Your Health

Joyce speaks with Margaret Downs and Mathew Call of Premiere Visual Voice, about Caption Companion, an 8 inch tablet that automatically captions the conversation.

Community support plays a crucial role in the lives of families affected by rare diseases. Together, we can build a supportive community that uplifts and empowers those facing the challenges of rare diseases.

Complex conditions often involve multiple symptoms, require interdisciplinary care, and can significantly impact a patient's quality of life. Reach out, seek help, and advocate for your needs. The path may be challenging, but with the right tools and support you can navigate it successfully.

Catherine Anderson was diagnosed with idiopathic subglottic stenosis. She has not only done research for her own case, she created a support group on Facebook for others with ISGS of any origin: injury during surgery, injury during intubation for COVID or other emergency conditions, or "idiopathic" as in her case -- cause unknown.

Ina Pinkney, the Breakfast Queen of Chicago, joins Joyce Graff to speak about Post Polio Syndrome, which can impact someone who survived polio. It tends to occur 20 or more years after the initial illness.

Host Harvey Bravman focuses on her work with Powerful Patient, empowering people to partner with their health care providers and manage their own health.

Members of the 1994 Board of Directors of the VHL Alliance meet with Chandra Clark, current Executive Director, and Heidi Leone, Director of Advancement.

Positional Orthostatic Tachycardia Syndrome (POTS) is one of the many multi-system conditions that are very tricky to diagnose. It is estimated that some 3 million people are affected, but there is no simple test to make a diagnosis. The average time to diagnosis is about four years, and about half of all diagnoses are ultimately made by a cardiologist.

Marta Szulc, newly appointed Executive Director of the International Kidney Cancer Coalition, joins Joyce, Robin, and Mike to talk about the many ways that IKCC supports patients, advocates and caregivers around the world who are dealing with kidney cancer.