Many Faces of LEMS
Like many rare diseases, LEMS can present itself differently from patient to patient
Because of this, getting a diagnosis of Lambert-Eaton myasthenic syndrome (LEMS) can be challenging. It is important to share with your physician any symptoms or activities you’re struggling with, even if they seem minor. On the surface, two symptoms may seem unrelated but might actually be an indicator of an underlying condition. A single outlying experience might help lead to diagnosis.
Welcome to Many Faces of LEMS—an initiative to inform, ignite, and empower the LEMS community by highlighting the people and stories behind the disease.
PROGRAM GOALS
INFORM on the importance of identifying the secondary symptoms connected to LEMS—beyond the primary complaint of muscle weakness—when seeking a diagnosis
IGNITE a conversation with the LEMS community about the importance of recognizing and sharing the entirety of their symptomology with health care professionals
EMPOWER an integrated and supportive LEMS community of patients, caregivers, and care providers by sharing experiences, knowledge, and learnings
STAY INFORMED: Join the Many Faces of LEMS community.
Keys to getting a LEMS diagnosis—it’s in the details!
This Many Faces of LEMS webinar aims to facilitate conversations between patients and health care providers to help ensure the complete account of the patient’s experiences, providing physicians with the greatest opportunity to expedite diagnosis.
Like many rare conditions, LEMS often goes undiagnosed for long periods of time—sometimes years—due to common symptomology among several diseases. The goal of this webinar is to help shorten the time to diagnosis. Individual LEMS experiences can vary greatly. The answers patients are seeking and the indicators that physicians are looking for are usually found in the details.
Please join Jim Joyce and Dr. Vernino for an enlightening discussion regarding the many symptoms of LEMS.
Meet the speakers
Meet Dr. Vernino
Dr. Vernino is a teaching professor and Executive Vice Chair for Academic Affairs in the Department of Neurology at UT Southwestern Medical Center. He serves as Director of the Autonomic Disorders Clinic, the multidisciplinary Multiple System Atrophy (MSA) Clinic, and the Autonomic Disorders Fellowship Program. He is also Co-Director of the Autoimmune Neurology Fellowship Program. Dr. Vernino specializes in evaluating, diagnosing, and nonsurgically treating autoimmune neurological disorders, autonomic disorders, and neuromuscular disorders.
He earned his medical and Ph.D. degrees in neuroscience at Baylor College of Medicine and completed a neurology residency and fellowship training in neuroimmunology and electromyography (EMG) at Mayo Clinic in Rochester, Minnesota.
Meet Greg
Living with LEMS
Using insights into his experiences with symptom tracking, Greg provides viewers with advice on navigating the diagnosis process and communicating with physicians.
Meet Jamie
Living with LEMS
Along with known LEMS symptoms such as muscle weakness, fatigue, and balance issues, Jamie details her unique experiences with LEMS symptoms that can be hard to describe or change over time, including difficulty lifting items and difficulty writing.
Meet Tescha
Living with LEMS
Tescha provides perspective on the less common symptoms of LEMS, including respiratory issues that can often go misdiagnosed.
LEARN MORE ABOUT NAVIGATING THE WORLD OF RARE DISEASE ON THE MIGHTY’S FACEBOOK LIVE.
Sponsored by Catalyst Pharmaceuticals, Inc.