In this episode of The Health Advocates, we’re joined by Cristina Montoya, a registered dietitian, advocate, and patient living with both rheumatoid arthritis and Sjögren’s disease. Cristina shares her diagnosis journey, the challenges of managing symptoms from childhood to adulthood, and how she uses her lived experience to guide others through nutrition and advocacy. We also hear from Erik Stone, Director of Data, Learning, and Evaluation at GHLF, who breaks down insights from a recent GHLF survey of people living with Sjögren’s. Together, they highlight the need for better education, tailored treatments, and more support for the Sjögren’s community.

Among the highlights in this episode:

00:54: Cristina Montoya introduces herself, her background as a dietitian, and her personal experience living with rheumatoid arthritis and Sjögren’s

01:39: Cristina explains how to pronounce “Sjögren’s” and offers a clear overview of what the disease is and how it progresses

04:04: Cristina shares her childhood experience with undiagnosed symptoms of Sjögren’s, including dry eyes, parotid swelling, fatigue, and difficulty swallowing

07:49: Steven asks about dietary considerations; Cristina explains how Sjögren’s affects the entire digestive tract and why food texture matters

10:25: Cristina offers ideas for eating leafy greens like kale and how smoothies can be adapted to reduce GI discomfort

13:23: Cristina shares what inspired her to become an advocate, describing herself as an “accidental advocate” who became active after attending her first patient conference in Canada

15:08: Cristina addresses common misconceptions, including that Sjögren’s is “just a dry mouth disease” and not disabling

17:38: Erik Stone joins the conversation to share GHLF’s survey findings: 84% of respondents want help managing symptoms and flares

There’s still time to share your feedback — take our short survey here: https://us8.list-manage.com/survey?u=9d2bc7b86ce2e776e067d6fbc&id=92f785a222&attribution=false

20:24: Cristina reacts to the data and underscores the variability and impact of flares, especially for those without a co-occurring autoimmune condition

22:27: Cristina outlines the biggest needs in the Sjögren’s community: targeted treatments and improved management of fatigue, pain, dryness, and neuropathy

23:31: Cristina and Erik discuss who bears responsibility for education and call for better understanding at the medical school level

Below are additional resources mentioned by Cristina during the episode:

Sjogren's Advocate by Dr. Schafer: https://www.sjogrensadvocate.com/

The American College of Rheumatology, Sjogren’s Disease Experts, and Medical Educators Need to Step Up: https://bexiphd.com/blogs/news/the-american-college-of-rheumatology-sjogren-s-disease-experts-and-medical-educators-need-to-step-up

Sjögren's Recognized as a Disease, What's Next for Patients and Research?: https://www.arthritisdietitian.com/post/sjogren-s-disease-what-s-next-for-patients-and-research

Contact Our Host

Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org

A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.

We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

In this episode of The Health Advocates, we’re joined by Gaile Valcho, founder and president of the Brady Valcho Autism Foundation. Gaile shares her powerful story as the mother of a child with autism and her journey to address a gap in community resources in Holly Springs, North Carolina. She opens up about the challenges and triumphs of caregiving while living with lupus, the importance of community support, and her foundation’s work to build inclusive, joyful spaces for neurodiverse families.

Tune in for a conversation about resilience, empathy, and the everyday ways we can show up for one another.

Among the highlights in this episode:

01:30: Gaile shares how a lack of local autism resources motivated her to create the Holly Springs Autism Acceptance Day event

05:07: Zoe and Gaile discuss the emotional impact and validation of community showing up to support the event

06:01: Gaile explains how other families found crucial resources and joy through the event

08:00: Zoe highlights the importance of community support when navigating chronic conditions

10:23: Gaile describes how her lupus diagnosis intersected with caregiving for her son and changed her daily life

14:35: Gaile shares how treatments have helped manage her lupus and how her son Brady supports her

15:37: Gaile discusses the Spoon Theory and how it helps her communicate about energy and limits

19:53: For more information about the Brady Valcho Autism Foundation visit: https://bva.foundation/

20:27: Tune in to our Clinical Trials Talks podcast, visit https://creakyjoints.org/clinical-trials

Whether you’re ready to see if you qualify for a lupus clinical study, have questions about safety, benefits, and preparation, or simply want to hear real stories from other lupus patients, caregivers, and trusted providers who’ve been through it, visit https://creakyjoints.org/lupus-help-center/

21:41: Zoe reflects on her time with the podcast and thanks Steven and listeners

Contact Our Host

Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org

A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.

We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

In this episode, Steven breaks down a tumultuous week in public health and healthcare policy — from a growing trade war with China and its potential impact on medical imports, to the elimination of a vital pain research office at the National Institutes of Health (NIH). He also unpacks the mixed messaging from HHS Secretary RFK Jr. on vaccines, including unchecked claims about measles treatments.

Tune in for a timely and important public health update.

Among the highlights in this episode:

00:57: Steven unpacks the wave of new tariffs, and how they might impact healthcare costs and access

04:14: Steven explains the implications for patients if pharmaceutical products and medical devices face future tariffs

06:45: Steven discusses the shutdown of the NIH’s Office of Pain Policy and Planning, and how it could stall research and support for people living with chronic pain

08:23: Steven addresses RFK Jr.'s shifting statements on vaccines in response to a second measles-related death in Texas

09:12: Steven raises concern over RFK Jr.’s promotion of unproven treatments for measles, including cod liver oil and vitamin A

10:25: Steven explains why these alternative therapies can be harmful and misleading, especially when used instead of scientifically validated treatments

11:42: Steven gives a shout-out to GHLF’s Healthcare Matters podcast episode featuring former FDA Commissioner Peter Pitts, exploring deeper implications of agency cuts. You can listen to the full episode here: https://ghlf.org/healthcarematters/#episode55

12:10: Steven announces the launch of the new Lupus Help Center at www.lupushelpcenter.org — a go-to resource for people living with lupus

Contact Our Host

Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org

A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.

We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.