Myasthenia Gravis is a rare autoimmune disorder characterized by fluctuating weakness of the voluntary muscles, and is often referred to as MG. Currently, there is no known cure for MG, but there are many treatments that can make it easier to manage life.

Happy Myasthenia Gravis Awareness Month!! June is the official month of Myasthenia Gravis Awareness to help boost fundraising efforts to support research and advocacy to support the MG community.

MG is often referred to as the “snowflake disease” because it affects each person differently. No two cases are the same. The official color of myasthenia is teal.

Here is an excellent infographic from Myasthenia Gravis Foundation of America that acts as a simplified explanation:

Some additional facts that are helpful to know:

Myasthenia Gravis literally means “grave muscular weakness” and first appeared in medical reports in 1672. Source

Although not fully known, the thymus is thought to play a major role in the development of MG. Having the thymus removed (thymectomy) is a common treatment for Myasthenia.

There are two main types of autoimmune myasthenia- ocular and generalized. Ocular Myasthenia is when it only the eyes are affected. Generalized means it affects all of the major voluntary muscle groups of the body, including the diaphragm.

Because of the fluctuating nature of Myasthenia and the fact that it is rare, it can be hard to diagnose. Many people go months or even years without a diagnosis. (In Ella’s case, the symptoms sometimes started when the doctors left the room… probably one of THE most frustrating things!)

Testing for MG includes blood tests to check for antibodies, ice test, nerve conduction study, single fiber EMG, and imaging (MRI, CT) to check for abnormalities in the thymus. Source

Juvenile Myasthenia Gravis (JMG) is more variable in its presentation of symptoms and can mimic other illnesses, which makes diagnosis even more challenging. Source

Daily activities of living such as brushing your hair, holding heavier objects, chewing, swallowing and walking can be greatly affected during an MG flare.

Myasthenic crisis is a complication of MG that involves worsening of muscle weakness resulting in respiratory failure. (To me, this is the scariest part as a parent. When there are breathing difficulties at all, it can be hard to distinguish anxiety from actual weakness)

Some common triggers for MG flares are: heat, stress and anxiety, illness, overexertion, sunlight, sudden fear, extreme anger Source

Certain antibiotics and other drugs can worsen myasthenia symptoms such as Telithromycin, Fluoroquinolones (e.g. ciprofloxacin, levofloxacin, and moxifloxacin), botox, and magnesium and should not be used. Source and full list here

All cases of MG are unique, which is why it is called the “snowflake disease.”

Common treatments for MG are Mestinon (allows acetylcholine to remain at neromuscular junction for a longer period), Corticosteroids and immunosuppressant agents, IVIg (Intravenous immune globulins), plasmapherisis, and thymectomy. Source

If you’d like to donate to support research for a cure for Myasthenia Gravis, here is the link to Ella’s fundraising page for the upcoming 2020 MG Walk.