Generalized myasthenia gravis (gMG) and its impact in the workplace
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A rare and chronic autoimmune neuromuscular disorder, gMG challenges patients’ ability to work by impacting productivity, mental health, and economic stability – underscoring the need for flexible, informed, and compassionate workplace support systems
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HAVE YOU ever considered the impact of an invisible illness on an individual’s ability to navigate their working life? Generalized myasthenia gravis (gMG), a rare and chronic autoimmune neuromuscular disorder, presents a unique set of challenges for those living with the condition, particularly in the demanding environment of the workplace. Affecting approximately 11,000 to 12,000 people in Canada, myasthenia gravis disrupts the communication between nerves and muscles, leading to fatigable weakness that can fluctuate unpredictably throughout the day.1 Understanding the complexities of gMG is not only crucial for individuals living with it and their families but also for healthcare providers, health benefits professionals, and, perhaps most importantly in this context, employers and colleagues.
The journey for patients living with gMG in Canada is often fraught with challenges, from diagnostic delays to managing daily symptoms and navigating the healthcare system. Many individuals with gMG continue to bear an unacceptable symptom burden despite current treatment options, affecting their quality of life, ability to work, and participation in daily activities. Beyond the personal toll, gMG imposes a devastating economic burden on Canadian society. For many affected individuals, the condition forces reduced working hours or premature workforce exit, leading to considerable financial distress.
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Key challenges of gMG include:
The fluctuating nature of symptoms makes planning daily life, work, and social activities extremely difficult.
“On average, in our study, we found that patients see 7 different healthcare professionals and go to a clinic 9 times before receiving a confirmed diagnosis”
Dr. Homira Osman,
Muscular Dystrophy Canada
To raise awareness and explore these issues, a recent webinar, organized by Mapol and sponsored by UCB Canada, brought together experts Dr. Carolina Barnett-Tapia, a neuromuscular neurologist, and Dr. Homira Osman, VP of research and public policy at Muscular Dystrophy Canada (MDC). Together, they shed light on this condition and the unmet needs of Canadian patients.
The hallmark symptom of gMG is fatigable weakness, meaning muscle strength increasingly diminishes with activity and improves with rest. Weakness can be debilitating and often impacts patients’ ability to perform even usual daily activities. Often unpredictable, these symptoms can fluctuate throughout each day. The voluntary muscles affected often vary by patient and can lead to a range of symptoms:
Ocular: droopy eyelids and double vision are very common initial symptoms.
Bulbar: weakness affecting muscles in the face, throat, and jaw can cause slurred speech, difficulty swallowing or chewing, and changes in voice quality.
Limbs and neck: weakness in the arms, legs, hands, or neck can impact mobility and daily activities.
Respiratory: weakness of the diaphragm and chest muscles can lead to breathing difficulties, sometimes requiring urgent medical intervention (a myasthenic crisis).
combined with a very high level of disease burden, makes living with gMG particularly challenging.
Generalized myasthenia gravis affects individuals across all racial and ethnic groups. It occurs most frequently in young adult women (under 40) and older men (over 60), although it can develop at any age.5 This demographic profile means that gMG often affects individuals during key phases of their working lives, including early career development, peak earning years, and pre-retirement planning.5
The condition substantially impairs work capacity through both absenteeism and presenteeism. The multinational MyRealWorld-MG study, which included Canadian participants, found that 34.4 percent of individuals diagnosed with myasthenia gravis had taken sick leave in the previous month, nearly three times the rate observed in the working or studying general population.6
Furthermore, a significantly higher proportion of respondents with myasthenia gravis reported being unable to work at all due to their illness (16.8 percent compared with 4.8 percent in the general population).6 These findings are supported by the Adelphi Myasthenia Gravis Disease-Specific Programme™, in which employed patients with myasthenia gravis reported missing 13.3 percent of work time due to their condition. Even while at work, productivity was impaired by 26.7 percent, resulting in a total work impairment of 30.0 percent.7
The loss of productivity due to being unable to work full-time or needing extended time off is a major economic consequence. Furthermore, the chronic and unpredictable nature of gMG can impact mental health, leading to anxiety, frustration, and depression.
For plan sponsors and employers, understanding gMG is the first step toward creating a supportive workplace environment. This includes:
Awareness: recognizing that gMG involves fluctuating, fatigable weakness
Flexibility: where possible, offering flexibility in work hours or tasks to accommodate unpredictable energy levels
Open communication: fostering an environment where employees feel comfortable discussing potential needs or accommodations without fear of judgment
Focus on abilities: understanding that limitations may be intermittent, focus on the employee's capabilities
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The patient experience with gMG
The impact of gMG on the workforce
Published June 9, 2025
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Unpredictability
Patients frequently report feelings of anxiety, depression, frustration, isolation, and self-doubt, sometimes exacerbated by feeling dismissed or misunderstood by healthcare providers (“medical gaslighting”).
Psychosocial impact
Lack of awareness among non-specialist clinicians contributes to diagnostic delays.
Systemic hurdles
The patient journey can be even more difficult for individuals facing additional societal barriers related to race, income, gender, geography (rural vs. urban), or sexual orientation.
Intersectionality
Study of 10,069 Canadians with myasthenia gravis
The impact on work & finances
Total economic cost incurred over one year was $925 million
Average per patient cost
of $91,944
Largest expenditure was caregiver and patient lost productivity due to reduced work hours, extended leaves, early retirement (approximately 48% of costs), followed by inpatient stays (approximately 36% of costs).
Myasthenia gravis (MG) is a chronic autoimmune disease that results when the body’s own immune system mistakenly produces antibodies that attack crucial proteins at the neuromuscular junction – the critical point where nerve signals instruct muscles to contract.2 For some patients MG impacts the function of eye muscles only (ocular MG). In gMG, muscle weakness extends beyond the eye muscles to affect other areas of the body, including the limbs, neck, and respiratory muscles. In most individuals with gMG (around 85 percent), the immune system mistakenly attacks acetylcholine receptors (AChRs), essential for muscle activation.3 Less commonly (around 10 percent), antibodies target muscle-specific kinase (MuSK) receptors.3 Dr. Barnett-Tapia notes that because gMG is a rare disease, many healthcare professionals, including those working within the medical system, may never have encountered a patient with this specific diagnosis. This limited experience with MG and its generalized symptoms, including fatigue and weakness which can mimic other common problems, can lead to substantial delays in finding an accurate diagnosis.
What is gMG?
Even with available treatments, unmet needs remain within the gMG community. Many individuals continue to grapple with symptoms that limit their participation in work and daily activities.4,10,11
Supporting employees in the workplace
Neuromuscular disorders such as gMG impose a substantial economic burden that extends beyond direct medical costs. Research from Muscular Dystrophy Canada estimates the annual societal cost of these disorders in Canada at $4.7 billion, with productivity losses accounting for the largest share, approximately 42 percent of the total.8
The economic reality for gMG patients specifically is particularly severe. According to Dr. Homira’s research, an estimated 10,069 Canadians living with myasthenia gravis collectively incur annual costs of $925 million, an average of $91,944 per patient. Nearly half (48 percent) of these expenses stem from lost productivity, as both patients and their caregivers often reduce their work commitments or leave the workforce entirely.9
Mounting costs
References 1 Breiner A, et al. Epidemiology of myasthenia gravis in Ontario, Canada. Neuromuscul Disord. 2016;26(1):41–6. 2 Gilhus NE, et al. Myasthenia gravis. Nat Rev Dis Primers 5, 30 (2019). 3 Phillips WD, Vincent A. Pathogenesis of myasthenia gravis: Update on disease types, models, and mechanisms. F1000Res. 2016;5:F1000 Faculty Rev-1513. Published Jun 27, 2016. 4 Muscular Dystrophy Canada. Cost of Illness Study: The Burden of Neuromuscular Disorders in Canada. 2020. 5 National Institute of Neurological Disorders and Stroke (NINDS). Myasthenia Gravis [Internet]. NIH. [cited May 6, 2025]. Available from: https://www.ninds.nih.gov/health-information/disorders/myasthenia-gravis 6 Dewilde S, Phillips G, Paci S, De Ruyck F, Tollenaar NH, Janssen MF. People diagnosed with myasthenia gravis have lower health-related quality of life and need more medical and caregiver help in comparison to the general population: Analysis of two observational studies. Adv Ther. 2023 Oct;40(10):4377–94. 7 Pesa J, Choudhry Z, De Courcy J, Barlow S, Chatterton E, Thomas O, et al. The impact of myasthenia gravis severity on work and daily activities. Muscle and Nerve. 2024 Apr;69(4):428–39. 8 Osman H. Documenting Socioeconomic and Quality of Life Impact of Neuromuscular Disorders [Internet]. Muscular Dystrophy Canada [cited May 6, 2025]. Available from: https://www.raredisorders.ca/uploads/Documents/The-socioeconomic-impact-of-neuromuscular-disease-FINAL.pdf 9 https://canjhealthtechnol.ca/index.php/cjht/issue/download/13/symp2021 10 Barnett C, et al. Fatigability is a main driver of impairment in myasthenia gravis. PLoS One. 2014;9(5):e98089. 11 Jackson K, et al. Understanding the symptom burden and impact of myasthenia gravis from the patient’s perspective: A qualitative study. Neurol Ther 12, 107–28 (2023).
A complex condition demanding comprehensive understanding
Generalized myasthenia gravis is a complex condition demanding a comprehensive understanding that encompasses not only its clinical aspects but also the impact it has on the daily lives of patients and their families. Insights from experts like Dr. Barnett-Tapia and Dr. Osman underscore the challenges faced by Canadians with gMG, including diagnostic delays, fluctuating symptoms, significant economic and psychosocial burdens, and unmet treatment needs.
While the disease is treatable, and novel therapies offer new hope, continued efforts in research, drug plan navigation, patient support, and awareness are crucial to improving the journey and quality of life for those affected by this rare neuromuscular disorder.
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Copyright © 2025 KM Business Information Canada Ltd.
RSS
Advisory board
Authors
Enquiry
About us
Terms of Use
External contributors
Privacy
Contact us
Advertise
Newsletter
News
Focus Areas
Resources
Best in HR
Subscribe
Copyright © 2025 KM Business Information Canada Ltd.
RSS
Advisory board
Authors
Enquiry
About us
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External contributors
Privacy
Contact us
Advertise
Newsletter
News
Focus Areas
Resources
Best in HR
Subscribe
Many patients with myasthenia may have an invisible disability; they might have a normal or almost normal neurological examination at a given time
Dr. Carolina Barnett-Tapia, neuromuscular neurologist
“On average, it can take five years for Canadians with gMG to receive a confirmed diagnosis, often after seeing multiple healthcare professionals and numerous clinic/hospital visits”
Dr. Homira Osman,
Muscular Dystrophy Canada
Diagnosing gMG can be challenging due to its rarity and fluctuating nature. "Many patients with myasthenia may have an invisible disability; they might have a normal or almost normal neurological examination at a given time," especially if seen early in the day or after rest, notes Dr. Barnett-Tapia.
Dr. Osman adds that, “on average, it can take five years for Canadians with gMG to receive a confirmed diagnosis, often after seeing multiple healthcare professionals and numerous clinic/hospital visits.”4 “On average, in our study, we found that patients see 7 different healthcare professionals and go to a clinic 9 times before receiving a confirmed diagnosis.” It's especially hard for patients, as they don’t know how they will feel from one moment to the next. This unpredictability,
https://canjhealthtechnol.ca/index.php/cjht/issue/download/13/symp2021
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