EP 26 Ed McGrath

Rare Awareness Radio — Episode Title: One Step at a Time: Ed McGrath on Love, Advocacy, and Life with Myositis In this powerful episode of Rare Awareness Radio, we sit down with Ed McGrath, a passionate rare disease advocate, loving husband, and longtime partner to Marilyn McGrath, who lives with dermatomyositis—a rare autoimmune disease affecting the skin and muscles. Ed shares their deeply personal journey, beginning with the earliest signs of Marilyn’s illness during an anniversary trip, through a frustrating two-year search for a correct diagnosis. He recounts how they finally found hope and community through the Myositis Association (TMA), attending their first conference in 2013 and never looking back. You’ll hear about: - The emotional and physical toll of dermatomyositis - The impact of misdiagnosis and delayed care - The life-changing power of IVIG therapy - Navigating insurance and advocating for access - Ed and Marilyn’s role as mentors to newly diagnosed families - How community, education, and legislative action can spark change in the rare disease space Whether you're a caregiver, patient, clinician, or advocate, Ed's story is a testament to the strength of partnership, the importance of being your own advocate, and the real-world impact of rare disease awareness. 🔗 Learn more or get involved: 👉 https://www.myositis.org 👉 https://www.rareawarenessradio.org 🎙️ Hosted by Richard Juknavorian 💬 Subscribe, share, and help us amplify the voices of the rare disease community. #RareAwarenessRadio #Dermatomyositis #MyositisAwareness #CaregiverStories #RareDisease #PatientAdvocacy #IVIG #TMA #ChronicIllness #HealthEquity