June is MG Awareness Month! Let’s Be Proactive!

June is Myasthenia Gravis (MG) Awareness Month. Every year the MG community strives to create awareness, turning it into action by making sure the people we reach understand the challenges those of us diagnosed with MG face each and every day. We also need to work with our caregivers in providing us the best care and treatment available.¹

What is MG?

Myasthenia gravis is an autoimmune disease in which our own body attacks the areas where the nerves and muscle communicate. MG affects the voluntary muscles (muscles that you can move or control yourself) such as those in your arms and legs.²

Myasthenia gravis causes muscle weakness. Other areas affected can include the eyes, face, neck, and throat. This can lead to symptoms such as, drooping of 1 or both eyelids, blurred and double vision, changes in facial expressions, impaired speech, trouble swallowing, and shortness of breath. In my experience, the symptoms of MG may also lead to muscle cramps and pain. ²

Recognizing the complications

Myasthenia gravis is often referred to as the "snowflake disease" because the combination and severity of symptoms can be so different from one patient to another. This can also make it difficult to diagnose.

I was diagnosed with ocular MG in December 2008, which progressed to generalized MG. But, I was initially misdiagnosed in the emergency room. I was sent home and told to see my primary care physician on Monday. I had to get through a 4-day holiday weekend while having so much difficulty breathing. I learned later about a complication of MG called a myasthenic crisis.

This is a potentially life-threatening issue. Because this disease can affect our breathing, the muscles can weaken enough where a person needs medical attention. In my experience, this could have quickly become serious. And I know I'm not alone. Many other people have experienced misdiagnosis as well and may have been at risk of a crisis.²

Learning from other people's experiences

I have been working with my family and healthcare providers regularly to teach them more about the disease. Because of people like me that are sharing their experiences, I have learned so much about MG that I never knew before. Some of our experiences aren’t talked about much, if at all. It seems more real and comforting to know others share the same symptoms and emotions as I do.

Why should you care about MG?

Why should you be at all concerned about this rare disease? MG affects both men and women, occurs in all racial and ethnic groups, and it can occur at any age. It is not inherited, nor is it contagious. Although it commonly affects women under 40 and men over 60, I was almost 60 years old when I was diagnosed. Just because you aren't in a certain age group doesn't necessarily mean you're safe from getting MG.³

Tips on how to raise awareness

What can we do to bring awareness to our disease? We can continue to connect with others and give support where needed. We can share MG content on all social media platforms, talk to our family and friends about our experiences and treatments, campaign to bring more information to our caregivers, and even make a sign to put up in our community or yard (where allowed) about MG Awareness.

Consider contacting your legislative leader for MG exposure or talk with different media outlets to announce awareness month. Talk to doctors to make them more aware, advocate for someone, and maybe even write a letter to an editor!

There are many opportunities to volunteer as well, such as with the Myasthenia Gravis Foundation of America (MGFA). You can become an active participant in our MG group on social media. If you’re a nurse like me, retired or active, talk to your co-workers and the doctors you work with. Discuss MG with them. We’ve got to bring MG awareness to the forefront so we receive a prompt diagnosis and treatment.

Focusing on the medical community

This is a serious disease and we all need to know we are not alone. We need to know people care about our suffering. The medical community needs to be more informed in order to readily recognize MG and diagnose us correctly. As a nursing student many years ago, we spent less than 1 hour studying neuromuscular diseases.

Many of us who are misdiagnosed or struggling to get a diagnosis go without appropriate treatment for days, weeks, or even years. We need prompt, appropriate treatment, instead of being forced to suffer with unrecognized symptoms for a period of time. We need people, especially friends and families to understand what we’re going through and be there to advocate for us in our time of need.

We are here for you

There is so much more information available. Our community has numerous articles, written by other people like me, sharing their experiences living with MG. There, you can comment or ask questions. We try our best to respond to everyone. I hope you will read, talk, learn, and reach out to us.