Explaining myasthenia gravis (MG) to others can be challenging. We asked our support group leaders how they explain MG to people who are unfamiliar with the condition.
Kelly Aiken
There are two versions of this autoimmune neuromuscular disease. One version is ocular which can cause symptoms such as ptosis, double vision, and blurry vision. The other version is generalized and causes weakness that’s only supposed to affect voluntary skeletal muscles, such as the eyes, neck, shoulders, arms, back, hips, legs, throat, and diaphragm. However, smooth muscles, such as the esophagus or bladder are also known to be affected. Similarly, the throat and diaphragm can experience weakness which can lead to choking or challenges with breathing, people can go into what’s called a ‘crisis” and need medical attention. While crisis survival rates are extremely high, recovery can be difficult. Fatigue is often a massive part of this disease. Disease severity ranges from person to person. Symptoms can come slowly, or they can come on quickly like flipping on a light switch. When that switch is turned on, it can seem like someone turned off your energy and personality.
Janet Bauer
Myasthenia Gravis is considered the “snowflake” disease because every case is unique. Some people live a normal life that includes a career and family life, but for others with more severe symptoms, MG is their life and managing the disease is all they can fit into most of their days. While medications are available, finding the right one can take time and they don’t always work. It’s important to know that it’s not a one-size-fits-all disease and it can take time to diagnose and find a treatment plan that works.
It’s an autoimmune and muscular disease that causes your voluntary muscles to weaken easily. With my permanently damaged right eye from MG, I point out MG can cause droopy eyelids and double vision. Swallowing and breathing struggles and using arms and legs can be challenging. I need to rest to get my strength back.
Tammy Carter
I start by asking if the person has heard of MS (Multiple Sclerosis). The answer is almost always Yes!
From there, I explain the similarities of both diseases. Both MS and Myasthenia Gravis (MG) are autoimmune diseases that affect the neuromuscular and central nervous systems. In both conditions, the immune system mistakenly attacks healthy tissue. This can lead to symptoms like droopy eyelids, slurred speech (which can be so pronounced that people might think you’ve been drinking), muscle weakness, and fatigue in the face and jaw, making it difficult to chew and swallow. The key difference between these diseases is that MS primarily affects the spine and brain, while MG impacts the nerves and muscles.
Living with MG can be challenging. People often tell me, “You look normal, I’m sorry you are living with this disease.” My response is usually, “I don’t need sympathy, but awareness that this disease is rare and life-threatening.” I never take everyday tasks like brushing my teeth, combing my hair, or showering for granted. I’m thankful that I can still do these things and more for myself.
Gary Jackson
Myasthenia Gravis (MG) is a muscle-weakening disease that affects the body and like a snowflake. It’s different for everyone in every way. Every muscle in the body can be affected by weakness, and the severity of muscle weakening differs from person to person. Physical activities accelerate the symptoms causing fatigue. For those of us with Ocular Myasthenia Gravis, we can struggle to keep our eyelids open, and we may experience double vision because of eyeball drifting. Every muscle associated with seeing can become fatigued to the point of shutdown. Imagine how MG might affect your mouth, throat muscles, arm and/or leg muscles or all these muscles simultaneously. Essentially, every muscle group in the body can be rendered unable to function properly if diagnosed with MG. This condition could lead to a life-threatening myasthenia gravis crisis, where a person may require ventilator support.
Linda Loland
My explanation of MG depends on who is asking. If I’m out in public and someone asks why I’m using a walker, my reply is to say I have a neuromuscular disorder. I never use the word “disease” because people generally back up a bit for fear it’s contagious. Sometimes, that’s good enough. But if they genuinely want to know more, I’ll tell them I have myasthenia gravis and briefly describe how signals are being blocked between my brain and certain muscles. If I’m looking pretty healthy when I share this information, and the individual looks skeptical, I do fall back on my MG crisis experience and how I spent four weeks in the hospital, the first week on a ventilator in ICU. I want people to understand how serious MG can be, even if we’re looking great at the moment.
A few weeks ago, a woman approached me at the doctor’s office because we both had walkers. She became so interested in MG that she asked me to write down the name for her so she could go home and research it! I was so happy to have successfully educated someone about it.
Joyce Holste
I tell people that myasthenia gravis is a neuromuscular disease in which communication between the nerves and muscles are impaired.
SeAndrea Ferguson
People would perceive me as “normal” if I don’t tell them, and I don’t tell many people. I shared my story with others online and described it as a rare muscle disease that affects my voluntary muscles. My MG symptoms are less visible, so it’s hard for people to understand what I deal with daily. The hardest point to get across is that just because I’m younger doesn’t mean I don’t have my share of issues with this illness. I explained that I take medication every day just for my muscles to do their job. If I don’t take it or rest when I need to, my body will start to weaken and shut down. I emphasize rest as much as possible because my main symptom is general fatigue. I cannot do everything others my age do, which is frustrating. People forget I have MG. It’s important to know there is no ‘one size fits all’ treatment for MG.
Victor Yipp
I have this neuromuscular medical condition called Myasthenia Gravis. If I don’t mention this to others, most – if not all people – would perceive me as a normal person, taking into consideration my age (80). My only symptom is fatigue, for which I “prescribe” myself a daily nap of about an hour. I take no regular medications for MG. In 2017, I was diagnosed with the Anti-Musk version of MG, which is like a rare variant within a rare disease. Infusion with a specific medication (Rituxan/Rituximab) restored me to a condition of minimal symptoms. When I relapsed in 2022, the same treatment was given to me and again I responded successfully. I consider myself very fortunate. Most MG patients need some medication, even those with the same variant that I have. That may be why it’s called the “snowflake disease.” Everyone has to be treated individually.
