“gMG is a snowflake disease—no two people experience it the same.”

Greg, living with gMG since 2002

gMG is a snowflake disease—no two people experience it the same.
gMG is a snowflake disease—no two people experience it the same.
Patient Portrayal

UNDERSTANDING UNCONTROLLED gMG

As a chronic, autoimmune, neuromuscular disease, myasthenia gravis (MG) is a condition that may be present in your life for years.

Generalized myasthenia gravis (gMG) is a more severe form of MG, and may result in unpredictable symptoms that cause weakness throughout
your entire body.

What is uncontrolled gMG?

Watch the video to see what uncontrolled gMG means, and hear from others living with the condition.

Myth

gMG is well controlled for many people on treatment

Fact

For around half of the people living with gMG, their disease remains uncontrolled, meaning that they can experience debilitating chronic symptoms that impact daily life—even if they're on treatment

Myth

Exacerbations happen very rarely

Fact

Almost half of people experience an exacerbation (an acute worsening of symptoms) over a 6-month period

Myth

gMG is predictable and has only a minor impact on daily life

Fact

gMG can be unpredictable. 
The symptoms can vary by the person, day, or hour—greatly impacting daily life

THE ONE CONSTANT OF gMG IS ITS UNPREDICTABILITY

Your day-to-day experience, the risk of serious events, and the triggers of your gMG symptoms can make living with gMG feel completely unpredictable.

“Life with gMG is not a journey, it is an odyssey. You never know what is going to come up and throw off your goals.”

Greg, living with gMG since 2002

The one constant of gMG is its unpredictability
The one constant of gMG is its unpredictability
Patient Portrayal

gMG CAN FEEL UNPREDICTABLE

 

The two phases of gMG

Initial

~2-3 years

After being diagnosed, symptoms typically worsen, reaching their peak within the first 2 years. But for 1 in 5 people, worsening symptoms may continue after 2 years.

Continual

After the initial stage, people may continue to experience unpredictable and serious symptoms.

  • Initial

    ~2-3 years

    After being diagnosed, symptoms typically worsen, reaching their peak within the first 2 years. But for 1 in 5 people, worsening symptoms may continue after 2 years.

  • Continual

    After the initial stage, people may continue to experience unpredictable and serious symptoms.

The two phases of gMG

Initial

~2-3 years

After being diagnosed, symptoms typically worsen, reaching their peak within the first 2 years. But for 1 in 5 people, worsening symptoms may continue after 2 years.

Continual

After the initial stage, people may continue to experience unpredictable and serious symptoms.

  • Initial

    ~2-3 years

    After being diagnosed, symptoms typically worsen, reaching their peak within the first 2 years. But for 1 in 5 people, worsening symptoms may continue after 2 years.

  • Continual

    After the initial stage, people may continue to experience unpredictable and serious symptoms.

Symptoms can feel unpredictable

 

If your gMG is uncontrolled, the unpredictability of this disease may always feel present.

gMG symptom fluctuations can be spontaneous, changing by the person, day, or hour.

gMG symptom fluctuations can be spontaneous, changing by the person, day, or hour.

2 out of 10 people with gMG may experience a myasthenic crisis that may require hospitalization at least once during their lifetime.

2 out of 10 people with gMG may experience a myasthenic crisis that may require hospitalization at least once during their lifetime.

 

Triggers can feel unpredictable
 

gMG symptoms can worsen suddenly, caused by triggers beyond your control.

gMG symptoms can worsen suddenly, caused by triggers beyond your control.

Triggers may include:

  • Mental or physical stress
  • Changes in weather
  • Infections
  • Certain drugs
  • Vaccinations

MG EXPLAINED

Myasthenia gravis (MG) affects everyone differently, so understanding the condition can often feel overwhelming. Learning more about the science behind MG can help you more clearly communicate your symptoms to your doctor.

Myasthenia gravis (MG) affects everyone differently
Myasthenia gravis (MG) affects everyone differently
Patient Portrayal

WHAT IS MG?

Myasthenia gravis is a rare, chronic autoimmune
neuromuscular condition.

MG is a chronic condition, meaning that it can last for a long time. But it's important to remember that you are not alone. Between 36,000-60,000 people in the US are estimated to have MG.

The condition affects women at a younger age (under 50), while men are more likely to develop it after the age of 50.


There are two main types of MG:
Ocular MG
Ocular MG

Most people experience ocular MG symptoms first. This means the muscles that control the eyes and eyelids are easily fatigued and weakened.

Symptoms of ocular MG include:

  • Diplopia (double vision)
  • Ptosis (eyelid drooping)
Generalized myasthenia gravis (gMG)
Generalized myasthenia gravis (gMG)

gMG is considered a more severe form of the disease that affects the muscles throughout the entire body, including the eyes.

gMG weakness can disrupt everyday activities including walking, chewing, and breathing.

While gMG may often be referred to as MG, it is important to know that gMG is a different form of the condition with different symptoms.

 

I think anytime you are affected by a physical illness, you have to look at it as a learning opportunity. There is a lot that can be gained from it and in everyone’s life a little rain must fall.

Michael,
living with gMG since 1990

WHAT CAUSES gMG?

The chronic muscle weakness of gMG is caused by a constant attack on the meeting place of nerves and muscles called the neuromuscular junction (NMJ). This attack prevents muscles from properly receiving messages from the nerves.

When your muscles don't receive the signals from nerves, you experience muscle weakness.

The neuromuscular junction
The neuromuscular junction

 

This attack is caused by antibodies and the complement system—2 essential parts of your immune system, which normally works to protect you. 

AChR
  1. People with gMG make a type of antibody (called the AChR+ antibody) that activates the immune system and damages the NMJ. This disrupts normal communication between nerves and muscles. 
AChr complement
  1. The antibody activates the complement system (part of the immune system), which acts like a wrecking ball and interrupts signals that tell muscles to move, making them weak. 

MEET PEOPLE LIVING WITH gMG >

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Glossary

  • Acute

      Occurring suddenly and lasting for a short time. An acute disease is one with symptoms that only last for a short period of time. People with myasthenia gravis often experience both acute and chronic symptoms.

  • Antibodies

      An antibody is part of your body's immune system that protects you by attacking foreign proteins.

  • Autoimmune disease

      A disease in which the immune system, which normally protects the body, attacks it instead.

  • Chronic

      Long-lasting, persistent, or constant. A chronic disease is one with symptoms that occur over a long period of time. People with myasthenia gravis often experience both chronic and acute symptoms.

  • Complement system

      Part of your immune system that enhances (complements) the ability of your immune cells to do their jobs in protecting you against disease.

  • Exacerbations

      An exacerbation is an acute (short- term) worsening of gMG symptoms.

  • Fluctuations

      A fluctuation in gMG occurs when you experience a change in muscle strength.

  • Generalized myasthenia gravis

      A chronic autoimmune, neuromuscular disease that causes weakness in the skeletal muscles, which can worsen after periods of activity and improve after periods of rest. This weakness can affect moving, eating, and breathing.

  • Immune system

      A system that protects your body from foreign invaders by producing a response to fight infections and other threats.

  • Myasthenic crisis

      A medical emergency where the muscles you use to breathe get very weak, leading to respiratory failure.

  • Neuromuscular junction (NMJ)

      The meeting place of nerves and muscles. When the NMJ is destroyed, your muscles get weaker.

  • Uncontrolled

      As gMG affects each person differently, uncontrolled disease can also vary person to person. The most common signs and symptoms that may indicate uncontrolled disease include:

      • Myasthenia Gravis Activities of Daily Living Profile (MG-ADL)—a tool your doctor may use to assess the extent of your symptoms)—greater than or equal to 6

      • Some but not all of the following: Ongoing weakness, difficulty speaking, problems with chewing or swallowing, impaired vision or drooping eyelid, shortness of breath, or difficulty with activities such as brushing your teeth or combing your hair—which can impact your daily quality of life

      • Progression of symptoms requiring frequent treatment changes and/or increase in treatment dosing

      It’s important to speak with your doctor if you are experiencing these signs and symptoms of gMG to understand if your disease may in fact be uncontrolled.