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"Everything I can do to manage my gMG better is my priority."
Greg, living with gMG since 2002
Patient Portrayal
SEE THE IMPACT OF UNCONTROLLED gMG
How does gMG affect you?
Watch the video to see how gMG impacts people’s lives, and the importance of speaking up about your experiences.
THE IMPORTANCE OF COMMUNICATING WITH YOUR DOCTOR
gMG can disrupt many aspects of your daily life—physically, personally, and professionally. These symptoms may be hard for your doctor to see, so it's important to share how your gMG is affecting you. This should especially include how activities such as walking and chewing are impacted to major events like losing the ability to work or be with family.
Are you making modifications to make everyday tasks simpler?
While you may have to do some things differently while living with gMG, it is important to share with your doctor the modifications to your daily activities like grooming or cleaning.
An example of a modification is using a hair dryer stand because your arms are weak.
Your doctor will also need to know if these modifications continue to change over time to identify if your gMG is uncontrolled.
Patient Portrayal
Two ways to work better with your doctor
Use this discussion guide to help you share your day-to-day experiences.
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DOCTOR DISCUSSION GUIDE
Use this journal to keep track of important information and your MG-ADL scores.
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gMG PATIENT JOURNAL
My neurologist knows me the best, and I trust him completely.
Dale, living with gMG since 2015
See the impact of gMG: Physically, Personally, & Professionally
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7 out of 10 people have difficulty walking, which can affect things like climbing stairs
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4 out of 10 people have difficulty chewing and swallowing, which can lead to nutrition and weight issues
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Up to 7 out of 10 people have trouble doing household chores like cleaning or vacuuming
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gMG can cause people to rely more on a caregiver to help with daily activities
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Over a quarter of people experience unemployment
gMG is known as a “snowflake” disease because no two people experience the same symptoms. Download the gMG Patient Journal to track your unique experiences and share them with your doctor.
Many different clinical studies are used to show how gMG affects people with the condition.
Need help finding a doctor?
Finding a doctor you trust is key to better managing your gMG.
Antibodies usually attach to harmful things like bacteria. However, in gMG your body starts producing abnormal antibodies that instead attach to normal proteins in the NMJ. Most people with gMG make AChR antibodies. These antibodies activate the complement system (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.
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.
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.
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.
MuSK antibodies are a type of antibody. Normally, antibodies attach to harmful things like bacteria. However, in gMG your body starts producing antibodies that instead attach to normal proteins in the NMJ. MuSK antibodies prevent the muscles from receiving messages properly from the nerves. When your muscles don't receive the signal, you experience muscle weakness.
An 8-category questionnaire that allows you and your doctor to measure the symptoms that most affect your daily living. Each category is graded on a scale of 0 (normal) to 3 (most severe). An MG-ADL score can be between 0 and 24, with a higher score meaning your symptoms are more severe.
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 be uncontrolled.
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