Myasthenia gravis
Myasthenia gravis (MG) is a rare, chronic, autoimmune, neuromuscular condition where the body’s immune system mistakenly targets the connection between the nerves and the muscles.1, 2, 3
This means for people living with MG, voluntary muscles don’t respond well to the signals sent from the brain. MG can be characterized by drooping eyelids, extreme muscle weakness and fatigue.1, 2
Understanding MG
MG is a rare disease with a global prevalence of 100–350 cases per 1 million people.
MG impacts and interferes with the daily lives of people living with MG, friends, family members, and caregivers. A study from the Myasthenia Gravis Foundation of America (MGFA) found that MG impacted patients in various aspects of their lives:5
Of the participants in this study:*
• 79% found it impacted family life
• 79% found it impacted work life
• 84% found it impacted the ability to function in general
• 86% found it impacted the ability to do exercise
*Percentages represent sum of moderate and extremely affected patients.
Signs & symptoms of MG
The symptoms of MG are unpredictable and can fluctuate over days or even hours. They can also vary greatly, so individuals experience it in a very personal way which can cause profound uncertainty.6
In a recent population study, it was found that it was found that in 51% of people, the first signs of MG were problems with the eyes, such as double vision or drooping eyelids.7
The same study found that about 54.5% of people presenting with Ocular MG went on to develop generalized myasthenia gravis (gMG), which includes more generalized weakness of voluntary muscles across the body.7, 8 After diagnosis, symptoms typically worsen, reaching the most severe level within the first 2 years.
Between 15% – 20% of people living with gMG will experience a myasthenic crisis, that can lead to respiratory failure.9
Other symptoms include: 10,3
• Muscle weakness in arms and legs
• Head drop or head lag
• A change in facial expression
• Difficulty chewing or swallowing
• Impaired speech (dysarthria)
• Fatigue
Treatment/unmet need
While there are a number of treatments available to MG patients, many of these only offer symptomatic relief or are broad-acting, and some people living with MG do not respond well to them. 11 As a result, there is an urgent need to bring more targeted, well-tolerated treatment options that address the underlying mechanism of MG to physicians and patients.
The challenging treatment pathway
People living with MG report frequent misdiagnoses and confusion related to their condition, reflecting the broad and often unpredictable symptoms experienced.13
MG is most frequently misdiagnosed as 14 other conditions, including stress fibromyalgia and diabetes. 12 MG can lead to feelings of frustration and depression.13
Amid these misdiagnoses, those with MG report contacting over 14 different specialists at some point in their care pathway highlighting the challenges that MG patients face to find care.13
Prioritizing patients
UCB is focused on elevating the patient voice across all disease areas in which we work. We have worked alongside the patient community to conduct a patient-led analysis uncovering the reality of living with MG. 14 In this research, we partnered with a group of patients including the late Nancy Law – a former President of the Myasthenia Gravis Foundation of America (MGFA) and a patient expert.15 The analysis focused on the lived experience of MG, and identified gaps and areas in which care for the MG community could be improved.15
This type of analysis is critical as few studies have explored the impact of living with MG from the patient perspective.
Glenda’s experience
Glenda has been living with MG for nine years. Listen to her talk about the daily adaptations she makes due to MG, as well as the progress she is making every day.
Meeting the needs of the MG community
Listening to and learning from people living with MG is vital to ensuring we create meaningful change and find solutions that benefit the wider community. Partnering with a group of passionate MG patient advocates, we held an expert roundtable to identify the key challenges that needed addressing. Our subsequent report is a call-to-action, identifying three key areas to target:
1. Delayed diagnosis
2. Lack of recognition
3. Barriers to accessing support networks and care
The time is now to tackle these issues that burden those living with MG.
Using technology as part of a holistic approach to disease management
UCB is committed to bringing long-term value to the lives of people living with MG beyond its treatment portfolio. By combining scientific advances with digital innovation and harnessing the latest AI technologies, we hope to better serve patients and potentially improve their care.
Additional resources
Myasthenia Gravis Foundation of America (MGFA)
The Myasthenia Gravis Foundation of America (MGFA) is committed to finding a cure for myasthenia gravis and closely related disorders. Their vision is to create a world without MG. Learn more about how they support those with MG and work towards a cure here.
gMGNeverRests
Those living with uncontrolled gMG may have unpredictable and debilitating symptoms impacting their daily lives – even with treatment.
gMGNeverRests helps people living with gMG recognize the symptoms of uncontrolled gMG, communicate their experiences to their doctor, and connect with the gMG community.
EURORDIS
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 1000 rare disease patient organisations from 74 countries that work together to improve the lives of over 300 million people living with a rare disease globally.
National Organization for Rare Disorders (NORD)
The mission of the National Organization for Rare Disorders (NORD) is to improve the health and well-being of people with rare diseases by driving advances in care, research and policy.