HIGHLIGHTS: Patient Advocates

Episode 33 -- Patient Perspectives: Smell & Taste, Genetic Diseases, Cancer, and Multiple Myeloma

In this episode of "The Patients Speak" podcast, host Mark Stinson engages in insightful interviews with four inspiring individuals who share their experiences as patients and advocates in different health conditions.

·     Katie Boateng, head of the Smell and Taste Association of North America, discussing the importance of understanding the impact of smell and taste conditions on patients' daily lives.

·     Seth Rotberg, an HD (Huntington's Disease) patient advocate, emphasizes the need for genetic counseling and collaboration between patients and clinicians in the treatment and research of genetic and rare diseases.

·     Howard Brown, a two-time cancer survivor and author, shares his journey of resilience and hope in his memoir "Shining Brightly." He highlights the importance of forming a collaborative team and maintaining optimism while dealing with cancer.

·     Yolanda Brunson Sarrabo, a multiple myeloma patient advocate, emphasizes the significance of patient empowerment and effective communication with healthcare providers. She encourages patients to ask questions, express emotions, and consider participating in clinical trials.

Here are key quotes from each guest:

1. Katie Boateng:

"People want others to understand the enormous impact that smell and taste conditions have on their day-to-day lives. There seems to be a lack of empathy or understanding for how impactful these conditions can be."

2. Seth Rotberg:

"Genetic counseling is becoming more prevalent and important to know about the next steps. It's crucial to have the right resources and support when facing genetic and rare diseases."

3. Howard Brown:

"You gotta get up out of bed every day and push further and keep going. It's okay to sleep in bed one day; you gotta get back up the next day. Keep moving."

4. Yolanda Brunson Sarrabo:

"Everyone isn't a public speaker, but you can write down questions and use the nurses and healthcare team as resources. We need providers and researchers to find us, as there is a diverse range of patients with unique perspectives."

Tune in to this enlightening episode as patients share their insights and advocate for better understanding and communication within the healthcare system.

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