Top 5 Patient Advocate Stories of 2025

As 2025 comes to a close, The Educated Patient is spotlighting the top five patient advocate stories of the year — powerful, deeply personal narratives that resonated with readers and sparked important conversations across the patient community. From rare disease awareness and chronic illness advocacy to transplant survival and health equity, these stories highlight individuals who turned personal health challenges into purpose-driven action.

1. Life’s New Normal: Monica Seles on Living With Myasthenia Gravis

Tennis legend Monica Seles used her platform to raise awareness about myasthenia gravis (MG), a rare autoimmune disease she was diagnosed with after experiencing muscle weakness and vision problems. Living with MG has required her to adjust to a new normal, rely on careful planning and seek support from patient communities like MG United while emphasizing the importance of self-advocacy. By sharing her story — especially around high-profile moments like the U.S. Open — Seles hopes to improve awareness, encourage earlier diagnosis and remind others with MG that they are not alone.

2. Turning a Rare Disease Into a Lifelong Mission, With Ahmad Anouti, M.D.

At the Global Liver Institute’s 2025 Advanced Advocacy Academy (A3), Ahmad Anouti, M.D., a pediatric resident and liver transplant recipient, shared how growing up with biliary atresia and undergoing a complex transplant journey shaped his path into medicine. Facing delayed diagnosis, limited access to care and serious posttransplant complications, he credits his experiences with giving him purpose and a drive to serve patients at their most vulnerable moments. Through his involvement with A3, Anouti now advocates for liver health awareness and patient-centered care, emphasizing that informed and empowered patients can help improve health care systems.

3. Tori Spelling and Stella McDermott Open Up About Living With Eczema

Actress Tori Spelling and her daughter Stella McDermott shared their personal experiences with eczema and seborrheic dermatitis, describing the emotional, social and physical challenges they faced, including stigma and bullying. After discovering a steroid-free topical treatment, Stella saw significant improvement in her skin, which boosted her confidence and allowed her to live more openly. Through the Free to Be Me campaign, they aim to raise awareness, reduce stigma and show that eczema does not define a person and that no one should suffer in silence.

4. Advocating for Rural Patients With Rare Diseases, With Cecilia Duenas, Psy.D.

The Global Liver Institute’s Rare and Rural campaign shines a light on the unique challenges faced by people living with rare liver diseases in rural communities. In an interview, Cecilia Dueñas, Psy.D., founder of the PBC Research Foundation, shared how limited access to specialists, financial strain and geographic isolation affect patients with primary biliary cholangitis and other rare liver conditions. She emphasized that beyond medical care, building community and support networks is essential to reducing isolation and improving emotional well-being for patients living with rare disease.

5. How a Personal Struggle Sparked a Movement for Psoriasis Awareness

Ayesha Patrick shared her journey living with psoriasis, highlighting how delayed diagnosis and lack of awareness about how the condition appears on skin of color affected her life. A severe flare during the COVID-19 pandemic deepened her understanding of the disease and inspired her to advocate for others facing similar challenges. Through founding The PsoriaSis Collective and working with the National Psoriasis Foundation, she now provides education, support and resources to help women of color manage psoriasis and access proper care.