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

Greg, living with gMG since 2002

Woman living with uncontrolled gMG.
Woman living with uncontrolled gMG.
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.

There are many people living with uncontrolled gMG who may be experiencing unpredictable symptoms that impact daily life. Learn how to recognize the signs of uncontrolled disease, then be sure to have a conversation with your doctor about your day-to-day experiences.

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

Woman with gMG.
Woman with gMG.
Patient Portrayal

gMG CAN FEEL UNPREDICTABLE

The two phases of gMG

Image
Initial phase 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.

Image
Continual phase of gMG.

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. Sudden fluctuations and crises that cause hospitalization are important to keep track of and discuss during your regular doctor visits- alerting your doctor of any changes to your condition is important.

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.

 

Triggers can feel unpredictable
 

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

People with gMG sharing their experiences during an international patient experience study

Whenever I think about joining in on strenuous activities with friends, I'm never sure how far I'll make it.

Turns out stress is my main trigger, and it's what caused those first symptoms to show up.

 

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.

Woman with myasthenia gravis (gMG).
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 and 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:
SVG
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)
SVG
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?

gMG is caused by abnormal antibodies that attack the neuromuscular junction (NMJ), where nerves and muscles meet, and damage it.

Antibodies are an important part of a healthy immune system that attack harmful bacteria or viruses and protect us against infection. In gMG, the body produces abnormal antibodies that wrongly attack the NMJ and cause damage.

Image
AChR (acetylcholine receptor) antibody.

About 8 out of 10 people with gMG make a certain antibody called AChR (acetylcholine receptor).

AChR antibodies interrupt normal communication at the neuromuscular junction and cause additional damage by activation of complement (part of the immune system). Complement disrupts the structure of the neuromuscular junction itself and is one of the main causes of damage in AChR+ gMG.

Image
AChR

About 8 out of 10 people with gMG make a certain antibidy called AChR (acetylcholine receptor).

AChR antibodies interrupt normal communication at the neuromuscular junction and cause additional damage by activation of complement (part of the immune system). Complement disrupts the structure of the nauromuscular junction itself and is one of the main causes of damage in AChR+ gMG.

Image
MuSK (muscle­specific tyrosine kinase) antibody.

About 1.5 out of 10 people with gMG make a different type of antibody called MuSK (muscle-specific  tyrosine kinase).

MuSK antibodies also prevent muscles from receiving messages properly from nerves, which can lead to muscle weakness.

WHAT CAUSES gMG?

gMG is caused by abnormal antibodies that attack the neuromuscular junction (NMJ), where nerves and muscles meet, and damage it.

Antibodies are an important part of a healthy immune system that attack harmful bacteria or viruses and protect us against infection. In gMG, the body produces abnormal antibodies that wrongly attack the NMJ and cause damage.

Image
AChR

About 8 out of 10 people with gMG make a certain antibody called AChR (acetylcholine receptor).

AChR antibodies interrupt normal communication at the neuromuscular junction and cause additional damage by activation of complement (part of the immune system). Complement disrupts the structure of the neuromuscular junction itself and is one of the main causes of damage in AChR+ gMG.

Image
MuSK

About 1.5 out of 10 people with gMG make a different type of antibody called MuSK (muscle-specific  tyrosine kinase).

MuSK antibodies also prevent muscles from receiving messages properly from nerves, which can leads to muscle weakness.

TRACKING YOUR gMG SYMPTOMS

During your regular appointments, your doctor may use various assessment tools to see how your symptoms are impacting your daily life.

Two frequently used assessments:

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Myasthenia Gravis Activities of Daily Living (MG-ADL) Scale


The MG-ADL scale is a simple questionnaire that includes 8 symptom categories and is used to determine which symptoms impact you the most.

The MG-ADL scale enables you to share your unique experience with your doctor so they can get a clear picture of your gMG over time.

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Quantitative Myasthenia Gravis (QMG) Score


Your doctor may also assess your gMG symptoms through a quantitative myasthenia gravis (QMG) assessment. While the MG-ADL is self-reported, meaning you answer the questions, the QMG should be done by your doctor. It is a questionnaire that includes 13 symptom categories to test your physical function and muscle strength. Keep in mind that testing your physical function will include simple activities like swallowing water or stretching your arms and legs.

Glossary

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