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gMG • September 15, 2026

Research Reveals Comprehensive Burden of Generalized Myasthenia Gravis (gMG) Extends Far Beyond Clinical Symptoms

gMG

Study captures wide-ranging impacts on patients and caregivers across eight life domains, highlighting gaps in traditional disease burden assessments

Understanding the Full Impact of gMG on Daily Life

Research published in the Journal of Patient-Reported Outcomes sheds light on just how deeply generalized myasthenia gravis (gMG) affects the everyday lives of patients and the people who care for them. Through interviews and a large survey, researchers found 84 distinct ways the disease impacts daily life—many of which are missed by standard clinical tools and cost analyses.

gMG is a rare autoimmune disease that causes muscle weakness throughout the body. It affects roughly 37 per 100,000 people in the United States and can make it difficult to speak, swallow, breathe, or carry out routine physical tasks.1-4 The unpredictable and fluctuating nature of the disease creates unique challenges that ripple across patients' personal, professional and financial lives.

Key Findings: What Matters Most to Patients and Caregivers

Researchers spoke with 28 people (16 patients and 12 caregivers) to understand how gMG affects their lives. From those conversations, they identified 25 specific impacts organized into eight areas of life: occupation, financial, emotional health, physical health, sleep, social, planning and autonomy, and safety.

They then surveyed a larger group—239 patients and 81 caregivers—asking them to rate how relevant each impact was to their own experience on a scale of 1 to 5.

For patients, the areas that mattered most were financial (3.8/5), planning and autonomy (3.8/5), and physical health (3.7/5). Caregivers rated financial (3.6/5), sleep (3.5/5), and planning and autonomy (3.5/5) as their top concerns.

Importantly, impacts that are hard to put a dollar figure on—like missing out on career growth, losing independence or needing to carefully ration energy each day—were rated just as relevant, or more so, than direct medical costs.5

Uncovering Previously Unreported Impacts

Of the 84 impacts identified, 14 had never been reported in previous research. These included patients describing the need to "budget" their limited energy day-to-day, caregivers feeling like they are always on call, and fears about physical safety tied to disability and vulnerability.

The study also showed that certain groups, especially women, felt the burden more heavily. Patients with more severe disease and younger patients reported higher impact scores. Among caregivers, those who were unemployed, retired or disabled experienced greater effects compared with those working full-time.5

MG requires a lot of planning. The best way I describe it is I have an energy budget. I have to watch that budget…”

Patient interviewed for study

Why This Research Matters for Rare Disease

The EveryLife Foundation has estimated the total economic burden of rare diseases in the United States at $997 billion annually, with over half stemming from indirect costs such as lost income, reduced productivity and caregiving demands.6 This study adds to the growing understanding that traditional assessments focusing solely on clinical outcomes and direct healthcare expenditures significantly underestimate the true burden of living with gMG.

Understanding these comprehensive impacts can help healthcare professionals have better conversations with patients, support more informed insurance and policy decisions, and guide future research into how well treatments address what matters most to patients and families.

The full study is available in the Journal of Patient-Reported Outcomes (2026). DOI: 10.1186/s41687-026-01124-y.

This study was sponsored by Alexion, AstraZeneca Rare Disease. Please see full study for the complete list of authors, funding, competing interests, and other disclosures.

References

  1. Meriggioli MN, Sanders DB. Autoimmune myasthenia gravis: emerging clinical and biological heterogeneity. Lancet Neurol. 2009;8(5):475-490. doi:10.1016/S1474-4422(09)70063-8
  2. Salari N, Fatahi B, Bartina Y, et al. Global prevalence of myasthenia gravis and the effectiveness of common drugs in its treatment: a systematic review and meta-analysis. J Transl Med. 2021;19(1):516. doi:10.1186/s12967-021-03185-7
  3. Conti-Fine BM, Milani M, Kaminski HJ. Myasthenia gravis: past, present, and future. J Clin Invest. 2006;116(11):2843-2854. doi:10.1172/JCI29894
  4. Rodrigues E, Umeh E, Aishwarya, et al. Incidence and prevalence of myasthenia gravis in the United States: a claims-based analysis. Muscle Nerve. 2024;69(2):166-171. doi:10.1002/mus.28006
  5. Narayanaswami P, Sullivan J, Thiele C, et al. Characterizing and quantifying disease impacts of generalized myasthenia gravis (gMG) in the United States: insights from patient and caregiver interviews and surveys. J Patient Rep Outcomes. 2026;10(1):126. doi:10.1186/s41687-026-01124-y
  6. Yang G, Cintina I, Pariser A, Oehrlein E, Sullivan J, Kennedy A. The national economic burden of rare disease in the United States in 2019. Orphanet J Rare Dis. 2022;17(1):163. doi:10.1186/s13023-022-02299-5

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