Omar Sinno, MD, Medical Lead of Rare Diseases at UCB, describes a recent publication about the real-life impact of myasthenia gravis (MG).

Myasthenia gravis is a chronic autoimmune neuromuscular disease characterized by weakness of the skeletal muscles. Common symptoms include weakness of the muscles, especially in the face that make it difficult to control eye movement, facial expressions, chewing, talking, and swallowing. The condition results from a defect in the transmission of nerve impulses to muscles, which is due to the presence of antibodies against acetylcholine receptors or other neuromuscular endplate receptors. Treatment is limited to managing symptoms and there are no targeted therapies or cures currently available for this rare condition. 

As Dr. Sinno explains, ‘The Lived Experience of Myasthenia Gravis: A Patient-led Analysis’ is a new and unique exploration of the real-life impact of MG, which was published in the journal Neurology and Therapy. As the study was a collaboration between UCB and MG patients, it was co-authored by two MG patient advocates. The analysis highlights 9 key domains and 5 key themes about living with MG based on 114 insights and 50 supporting quotes. The 9 key domains are physical, psychological, social, reproductive/parenting, activities/participation, controlled/not controlled, treatment burden, and unmet needs. The 5 key themes that came from these domains are:

  1. The lives of people with MG are dominated by unpredictable, fluctuating symptoms, with periods of worsening and remission, causing uncertainty that makes planning challenging and creates feelings of vulnerability, which patients describe as being worse than the physical symptoms themselves 
  2. Consequently, people with MG constantly have to adapt and accept trade-offs as part of their everyday life – including in the critical areas of work, family planning and treatment
  3. Patients perceive a ‘treatment inertia’ in both themselves and their clinicians, which results in them not always receiving the level of care they need
  4. People with MG can feel disconnected from their physicians due to communication barriers and conflicting perspectives on the disease, treatment burden and treatment goals
  5. MG takes an emotional toll on patients, with many experiencing feelings of anxiety, frustration, guilt, anger, loneliness and depression, driven by the burden of disease, social isolation, loss of control and lack of support

One of the authors on this study is Nancy Law, a patient advocate who recently passed away. As Dr. Sinno says, her impact in the MG patient community was immense and she will be dearly missed by many.

To learn more about myasthenia gravis, visit our Myasthenia Gravis Learning Center here.