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REAL PEOPLE, REAL STORIES

MG Real Talks: Self-Advocacy to Better Partner with Your Doctor

Watch myasthenia gravis (MG) community members discuss self-advocacy tips that help them on their journeys.

Self-advocacy may be an important part of a person’s journey with MG. In this video, two MG community members, a neurologist and a moderator who lives with MG get together to talk about self-advocacy. Their conversation is based on their real experiences, offering strategies that may help people in the MG community become better self-advocates. Some of the tips they discuss include:

  • Finding a healthcare team during their MG journey
  • How they self-advocate while speaking with their doctors
  • Educating their healthcare team about their MG
  • How resources like the Doctor Discussion Guide and Myasthenia Gravis Activities of Daily Living (MG-ADL) scale may be useful
  • What someone who is newly diagnosed may want to look for in a healthcare team
  • Advice on how someone living with MG can be their own best advocate

Learn more about the panelists

Close-up of Bryan

Bryan* was diagnosed with myasthenia gravis in 2017 after a seven-year journey to find out what was causing his muscle weakness and fatigue. Over time, he learned how to self-advocate so he could better communicate with HCPs, which eventually led to his MG diagnosis. He believes that self-care practices help him with his self-advocacy.

Close-up of Stephanie

Stephanie* has been living with myasthenia gravis since her early 20s. Though she recognizes MG is not hereditary, she became part of the MG community when her father was diagnosed a few years before her. Helping him navigate his MG journey, along with her own diagnosis, has led to her belief that being prepared before doctor appointments is a great way to practice self-advocacy.

Close-up of Lauren

Lauren lives with MG and is a member of the patient advocacy team at argenx. Self-advocacy has not always been easy for her, but she has learned strategies—like symptom tracking or ways of discussing her medical history with a new doctor—that make her feel more confident as her own self-advocate.

Close-up of Matt

Matt is a neurologist and has worked with many people living with myasthenia gravis. He knew he wanted to be a doctor from a very young age and became interested in neurology during medical school. Matt believes that education is a powerful first step toward a person’s ability to be an effective self-advocate. He prioritizes education early in his partnerships with people living with MG.

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