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Myasthenia Gravis (MG)

Myasthenia Gravis (MG) is a rare, chronic neuromuscular disorder where communication between the nerve and the muscle is disrupted, causing debilitating and potentially life-threatening muscle weakness.1

77.7

per million

Approximately 77.7 people out of every million are affected globally2

5.3

new cases per million

On average, 5.3 new cases of MG occur each year for every million people2

Mihoko

I felt heaviness in my body when I travelled a long distance for a relative’s wedding. I also felt my eyelids dropping and found difficulty in swallowing food. I thought I was just tired because I was very busy at work at the time and wasn’t getting enough sleep. But a little later, when I was driving my car, I started to see two traffic signals or two roads. That’s when I thought: ‘There’s something wrong with me,’ so I decided to see a doctor.

 

– Mihoko, Living with MG

The Journey to a Myasthenia Gravis Diagnosis

MG symptoms can differ significantly from person to person, which means the path to a diagnosis is not the same for everyone.3 Although MG can develop at any age, women with MG are typically diagnosed at <40 years old compared to men aged >50 years old.4 Patients often face significant delays in diagnosis due to the unpredictable nature of the disease, which makes it difficult to detect during clinical exams.5-8

For years, I kept going to my doctor about the fatigue and the walking problems... but I could never duplicate it in the office. It was scary, but without proof, it just went unexplained.

 

– Sharon, Living with MG

Symptoms of Myasthenia Gravis

Some MG symptoms include:4,9

Eyelid drooping   logo

Eyelid drooping 

Blurred or double vision logo

Blurred or double vision

Difficulty speaking logo

Difficulty speaking 

Difficulty chewing/swallowing  logo

Difficulty chewing/swallowing 

Choking  logo

Choking 

Difficulty supporting neck  logo

Difficulty supporting neck 

Shortness of breath/difficulty breathing  logo

Shortness of breath/difficulty breathing 

Weakness in arms and legs  logo

Weakness in arms and legs 

Fatigue from repeated muscle use logo

Fatigue from repeated muscle use

The Different Types of Myasthenia Gravis

Generalized Myasthenia Gravis
(gMG)10

 

  • Characterized by fluctuating muscle weakness and exertional fatigue, which can significantly limit ability to complete daily activities
  • Trouble chewing and swallowing, which can affect eating and nutrition
  • Difficulty speaking, standing up, and lifting arms
  • Ocular symptoms of drooping eyelids and double vision

Ocular Myasthenia Gravis
(oMG)1, 10

 

  • Involves symptoms isolated to the eye muscles, which can significantly affect daily functioning
  • Drooping eyelids that can obstruct vision or worse with fatigue
  • Double vision, which can interfere with reading, driving, and other daily visual tasks

Auto-AB Subtypes

 

MG has several autoantibody subtypes, defined by the target protein:

  • Acetylcholine Receptor antibody-positive MG (AChR-Ab positive MG)
  • Muscle-specific tyrosine kinase antibody-positive MG (MuSK-Ab positive MG)
  • Low-density lipoprotein receptor-related protein 4 antibody-positive MG (LRP4-Ab positive MG)
  • Triple-seronegative MG (tSNMG), meaning standard blood tests are negative for AChR-Ab, MuSK-Ab, and LRP4-Ab

The types of MG described above are some commonly recognized forms of the condition but do not represent all MG subtypes.

Impact of Myasthenia Gravis

People living with MG experience debilitating muscle weakness, which can lead to difficulties with vision, mobility, speaking, swallowing, and even breathing. As a result, they may lose the ability to perform daily activities, which can lead to loss of work and personal independence.

For many people, MG affects the ability to manage and complete everyday activities, such as:10, 12-13

Holding arms outstretched logo

Holding arms outstretched

Ability to drive logo

Ability to drive

Climbing stairs and getting out of chairs logo

Climbing stairs and getting out of chairs

Brushing teeth or coming hair logo

Brushing teeth or combing hair

Doing housework logo

Doing housework

Breathing (in severe cases) logo

Breathing (in severe cases) 

Why this Happens

 

MG occurs when the immune system produces IgG antibodies that block, alter, or damage the neuromuscular junction — the part of the body where the brain tells the muscle to move.14-15 The condition can affect any voluntary muscle, including those controlling eye movements, facial expression, speaking and swallowing, and arms and legs. In more life-threatening cases, MG can affect muscles responsible for breathing.

Explanation of why MG happens
Eri story

I had a hard time eating. It was difficult to swallow and breathe. I had double vision and felt extremely fatigued.

– Eri, Living with MG

Eri

I had a hard time eating. It was difficult to swallow and breathe. I had double vision and felt extremely fatigued.

– Eri, MG patient 

Treating Myasthenia Gravis

MG is a debilitating disease, requiring early, assertive treatment for better long-term outcomes. Although many people living with MG respond well to treatment, 15-20% of patients are considered difficult to treat and will continue to experience moderate or severe muscle weakness.16 Commonly used therapies are associated with limitations, such as symptomatic effect only, slow onset of action, and broad/unselective immunosuppression, which may increase treatment burden and can be insufficient in achieving treatment goals.

While there is no cure for MG, advancements in MG treatment research aim to not only treat symptoms, but also to target the underlying causes of the disease. Ask your doctor about which treatment options may be appropriate for you.

Treatment Goals

Reaching minimal symptom expression (MSE) is an important goal for MG treatment. MSE reflects the point at which MG symptoms are well controlled and have minimal impact on daily life. When treatment strategies are working well, they don’t just control the disease — they help patients feel and live better. 

Patient Stories

  

When I was younger they told me I would never walk again, but I grew up playing basketball, running and just doing everything possible… I was able to beat the odds on that, and I intend to beat to odds on MG.

 

– Eri, Living with MG

  

As much as my family wanted to help me or wanted to be there for me, they could not even begin to understand what was going on with me, and so I felt very much alone in this journey… Writing has always been like a place of solace for me, so I started blogging, and I slowly found my community.

 

– Morgan, Living with MG

  

I was diagnosed with MG at age five, so I was so young…And I do feel really lucky that I was young and I have no memory of that time in my life, as well as I feel lucky that we didn’t have to spend a lot of time trying to figure out what it was.

 

– Allison, Living with MG

  

Many MG patients may think that their future is uncertain because of their disease. Although we can’t change reality, I think it is important for all of us to change our current living environment, perspective, and mindset and try to get to a place where we can achieve sufficient happiness to alleviate some of the suffering and hardship we may experience.

 

– Mihoko, Living with MG

Clinical Trials

Explore our ongoing clinical trials for MG.

ADAPT SERON logo

ADAPT SERON

 

Program:
Efgartigimod

Phase 3 trial of IV efgartigimod for the treatment of AChR-negative Generalized Myasthenia Gravis (gMG).

Oculus logo

Oculus

 

Program:
Efgartigimod

A Phase 3, Randomized, Double-Blinded, Placebo-Controlled, Parallel-Group Design Study Evaluating the Efficacy and Safety of Efgartigimod PH20 SC Administered by Prefilled Syringe in Adult Participants with Ocular Myasthenia Gravis.

ADAPT Jr. logo

ADAPT Jr.

 

Program:
Efgartigimod

Open-label Uncontrolled Trial to Evaluate Pharmacokinetics, Pharmacodynamics, Safety, and Activity of Efgartigimod in Children From 2 to Less Than 18 Years of Age with Generalized Myasthenia Gravis.

ADAPT Jr. Sc logo

ADAPT Jr. SC

 

Program:
Efgartigimod

Open-label, Uncontrolled Study to Evaluate the Pharmacokinetics, Pharmacodynamics, Safety, and Activity of Efgartigimod PH20 SC in Participants From 2 to Less Than 18 Years of Age With Generalized Myasthenia Gravis.

Navyvgate logo

Navyvgate

 

Program:
Efgartigimod

A Non-interventional, Post-authorisation Safety Study of Patients Treated with Efgartigimod Alfa.

Resources

For more information on this disease, please find here additional resources and links to advocacy organizations.

logo Myasthenia Gravis Foundation of America

Myasthenia Gravis Foundation of America
myasthenia.org 

logo Muscular Dystrophy Association

Muscular Dystrophy Association
www.mda.org  

logo Myasthenia Gravis Association (Missouri, Kansas, Northwest Arkansas) 

Myasthenia Gravis Association (Missouri, Kansas, Northwest Arkansas) 
www.mgakc.org  

logo Myasthenia Gravis Foundation California 

Myasthenia Gravis Foundation California
www.myasthenia-ca.org  

logo Myasthenia Gravis Association Colorado  

Myasthenia Gravis Association Colorado
www.4-mga.org   

logo Myasthenia Gravis Foundation of Michigan

Myasthenia Gravis Foundation of Michigan
mg-mi.org 

logo Myasthenia Gravis Minnesota 

Myasthenia Gravis Minnesota
www.mgminnesota.com

logo MG Japan

MG Japan 
www.mgjapan.org  

logo Myasthenia Gravis Holistic Society 

Myasthenia Gravis Holistic Society 
www.mgholisticsociety.org 

logo Myasthenia Gravis Foundation of America

Myasthenia Gravis Foundation of America
myasthenia.org 

logo Muscular Dystrophy Association

Muscular Dystrophy Association
www.mda.org  

logo Myasthenia Gravis Association (Missouri, Kansas, Northwest Arkansas) 

Myasthenia Gravis Association (Missouri, Kansas, Northwest Arkansas) 
www.mgakc.org  

logo Myasthenia Gravis Foundation California 

Myasthenia Gravis Foundation California
www.myasthenia-ca.org  

logo Myasthenia Gravis Association Colorado  

Myasthenia Gravis Association Colorado
www.4-mga.org   

logo Myasthenia Gravis Foundation of Michigan

Myasthenia Gravis Foundation of Michigan
mg-mi.org 

logo Myasthenia Gravis Minnesota 

Myasthenia Gravis Minnesota
www.mgminnesota.com

logo MG Japan

MG Japan 
www.mgjapan.org  

logo Myasthenia Gravis Holistic Society 

Myasthenia Gravis Holistic Society 
www.mgholisticsociety.org 

References:

  1. Hehir MK, et al. Neurol Clin. 2018;36(2):253-260. 2. Green JD, et al. BMJ Open. 2020;10(9):e037909.
  2. Carr AS, et al. BMC Neurol. 2010;10:46.
  3. Gilhus NE, Verschuuren JJ. Lancet Neurol. 2015;14(10):1023-1036.
  4. Grob D, et al. Muscle Nerve. 2008;37(2):141-149.
  5. Spillane J, et al. BMJ. 2012;345:e8497.
  6. Beekman R, et al. J Neurol. 1997;244(2):112-118.
  7. Wang L, et al. BMC Neurol. 2017;19;17(1):77.
  8. Khadilkar SV, et al. Neurology India. 2014;62(5):492-497.
  9. Tworks S, et al. Health Qual Life Outcomes. 2010;8:129.
  10. Wolfe GI, et al. Neurology. 1999;52.(7):1487-1489.
  11. Gilhus N. N Engl J Med. 2016;375(26):2570-2581.
  12. The Centre for International Economics. Final report: the cost to patients and the community of Myasthenia Gravis. 2014. Accessed March 27, 2024. https://www.touchneurology.com/wp-content/uploads/sites/3/2018/06/www.thecie.com_.au_wp-content_uploads_2014_06_Final-report_Economic-Impact-of-Myasthenia-Gravis-08112013.pdf.
  13. Jacob S. Eur Neurol Rev. 2018;13(1):18-20.
  14. Gilhus NE, et al. Nat Rev Neurol. 2016;12(5):259-268.
  15. Martyn JA, et al. Anaesthesia. 2009;64(1 suppl):1-9.
  16. Gilhus NE. J Neurol. 2023;3329-3340.