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

Check out these kits for MG groups to get resources that may help your support group members have better conversations with their healthcare teams.

Learn more about the panelists

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.

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.

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.

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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*Paid contributor to MG United